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When to stay home for the day

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Posted 10/2/2009 11:56 PM (GMT 0)
Hi everyone,

 

I just had some questions as far as when its okay to stay home from work.  I've recently gotten off my methotrexate and now my Lupus is active again.  My doctor has allowed me off because we want to try to have a baby.  I'm never sure when I have pain if its better for me to stay home for a few hours or the day, or if I should go and try to work. 

 

This week I've have severe pain in my hands (I'm a banker by day-need those to count and type with) to the point that I couldn't move my index finger in my left hand or hold a pen in my right hand.  My right hand got better as the day went on, but finally today I can move my right index finger.

 

With all of this I'm extra tired and pretty moody.  I've been woken up by horrible pain in the night and the only thing that soothes it is the heating pad or ice packs.  I'm trying not to take extra pain killers because I need to prepare for what could be a really long year ahead of me.

 

Also, I've had swelling in my feet and can't wear my regular shoes to work.  I own some ugly black crocs and my employer says its okay to wear them-they are very good about it.  I have red spots on my skin in areas that hurt.

 

I did stay home half a day last week because I really couldn't move.  I also couldn't stop crying-it was horrible. 

 

Is it better to stay home and rest?  Does our body really get better with rest or do we need to keep moving so we don't get so stiff?  I'm really confused and I don't want my employer to think that I'm taking advantage of them by taking so much time off when I need it. 

 

Thanks!

Posted 10/3/2009 5:30 AM (GMT 0)
Tammy,

I believe you should have a long conversation with your doctor, and maybe your boss about this. I've always read that rest is so important to lupus patients. I do hope that on the days that you go to work you have somewhere to lie down for a rest when you need one. I hate to hear about the struggles you're going through. It makes me feel so bad when I read posts you working women write. Just the struggle of lupus alone is tough enough. My heart goes out to you.

Pat
Posted 10/3/2009 11:33 AM (GMT 0)
managing lupus is a fulltime job itself. Before I had to finally quit (I'm almost 56), I started cutting down hours it seemed by the week. Luckily my job did not require standing, but extensive hand and arm movement, on a drafting table. I had a wonderful boss, they got me a special table, and allowed me to lay down in the break room with lights dimned, and my headphones on with relaxing music,or hypnosis c.d.'s. Of course I had to clock out for this,but was well worth it for me and them. Lupus DEmands to be taken care of first, if you do that, the rest of your life will be more manegable, and with less pain. When I am having a really bad flare, I try to remember I have lupus, It's not going to have me. I take my pain pills when I need to,of course this is an indvidual choice for everone, but I could function well at work with half doses. When I got home the ice packs came out,I layed down in bed, with the full dose.I loved my job,the people,and still miss it terribly and never had planned to leave it, but I always remember a joke, that seems based in fact. Someone asked God to tell them a joke, God's reply was Make a plan, it has helped me alot when I start planning things. Hope this helps. God Bless, Namaste Raven1954
Posted 10/3/2009 4:00 PM (GMT 0)

Hi! Tammy and everyone,

I am finally being forced by illness to look into permanent disability, I am 54 and have been a nurse for 34 years. Life is all about balance, and lupus really skews that. Maybe it would help if you wrote a list, and put life in priority order, identify goals and ask your close family what they think, and maybe you could craft a compromise. Know that the decisions you make rt. now, will impact conception chances, and healthy pregnancy chances, and your level of wellness 30 years down your road. Could you not work for now? Or decrease your workdays to 3, i.e. everyother? That worked for me for many years. We have to listen what our body is telling us, and adequate rest is vital. I vote talk to your dr., husband and then boss. It is great that your dr. knows you want to have a child well before you start. So you can be in remission, as healthy as possible, and on meds that won't hurt your baby. And it wouldn't hurt to ask your dr. to refer you to an infertility endocrinologist or rheumatologist, someone who has experience taking care of pts. with autoimmune disease. Had my APA been identified sooner, and treatment started even before I conceived, I would have had better chances with the babes I lost.

hugs,

suetoo

Posted 10/7/2009 4:35 AM (GMT 0)
Hi Tammy,

I find its really a personal thing you need to juggle. There are some days I wake and and just know there is no way I will make it through a full day at work. Sometimes a few extra hours rest is exactly what you need...

My Doc continues to mention how important it is to keep moving as much as 'you' 'I' can to keep the muscles active.

Its really important to listen to your body and if you need to rest, rest. Life with any autoimmune seems to be a real juggling act both physical and emotional. Sounds like your work is fairly understanding which is great (so is mine) but I can understand your predicament...I to often think how long can I continue to go full pace.

I really hope you come up with a solution that suits you best, like many of the above posts have mentioned perhaps a change in working hours may be an idea. I had a meeting with HR at work and arranged working from home once a fortnight as more of a health management scenario as I was taking time off when I was sick, the only problem is when you flair up you have already pushed yourself past the limit... so management program it was.

good luck.
Mish0609
Posted 10/9/2009 5:06 AM (GMT 0)
Tammy, if your muscles are tightlike mine (my nerves won't stop firing and my arms are like steel and tight and get stiff as do my hands, voltaren gell can help. It is a topical muscle relaxer. I think probably sitting in a chair hunched over a computer is the worst thing, but if you can change positions, keep you legs up and off your hips and spine all the time, you might be able to work somthing out. I used to work from home, from my bed, but have seen women working on laptops on a couch in the lounge. Maybe they would let you have aspecial chair to make things better for you. Getting up every fifteen minutes is recommended for healthy people. I used to nap at lunch and eat while I worked. Sometimes I'd go out to my van and sleep, ithad a seat that folded down into a bed. A fold up lounge chair can be helpful if its not to cold, youcan take it outside, or work while reclining. My big thing was my legs and feet. reclining I could work more. But when it gets worse, and it usually does, then you end up having to work from home or take time off. I'm sorry you are going through this and applaud you for working and trying to stick it out. Workig from home a few days a week can really help. That way you can work for two hurse, take a break, sleep if need bee and later wake and work again and work when you feel the best.

Take care and I will pray for you.
Posted 10/10/2009 3:35 AM (GMT 0)
Tammy, I've been able to work out a deal with my employer so that I can work from home approximately half the time. Some weeks I need to be there almost everyday but then there are weeks when I can work from home most days too, so it evens out. They have been very good about recognizing my needs. I have to concur with Marji that if there's any way you can work from home even occasionally, it could make a big difference.

Best wishes,
JoAnn
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