question for those who work/worked

[Patze]

Hi Dawnbr,

Let me also welcome you to the SJS World and family!  Please do look around as there are tons of topics to be had with scads of information that just might help.  If you don't find what you're looking for, just post as there is usually someone about that just might be able to help.

Wow, you do have a wild schedule and I thought mine was bad!  And then you bike a 100 miles a week?  Dang!  I sure wish I had your energy!

Come often, and I hope to be able to chat with you soon (the schedule can be reached by clicking the option at the top of this page).

Take care of yourself -

Patze

[bloodless]

Littleme, I wish I had an answer for you, but you what you describe is about right. I never feel like I have energy. By Thursday I'm worn out. Friday I watch the clock a lot. It takes almost the whole weekend to rest up enough to start the week. The only thing I can suggest is be sure to take your meds on schedule and go to bed early every day of the week. ( I'm so thankful for DVRs ).

[evamarie]

I just hit the 6 month mark with plaquinil and I see a really big difference.  I am almost back to my normal activities.  I recently went away for the weekend and I was really nervous about how it would affect me, and to my surprise, I felt fine.   I am so relieved because I have 2 vacations and a business trip coming up,  and I didn't want to hold anyone back. 

[littleme]

Evamarie,

That is great!  I am looking forward, if it happens, to the day I can feel a bit more normal about what I can do.  Congrats on this time of feeling good and enjoy it!!  After a month on plaquenil...I can tell a difference, but I am not yet to "normal" whatever that is.

[jordozmom]

Hi Littleme!

Just like someone else on here said, I could have written your post!

I work full time and I have a 13 year old son and I'm the exact same way - I do ok coming out of the gate on Monday but by Wednesday I am dragging myself through the front door after work.  Monday nights I actually cook dinner but by Thursday I am picking up pizzas because I just don't think I could stand up long enough to make anything.

And sometimes it is not even just from day to day but from time to time throughout the day!  There are days where I actually feel good and I'm productive at 8 a.m. and by 4:30 I just want to go home and crawl into bed!

Anymore I pretty much cringe when people want to make plans on the weekend because I know without that rest I will be hurting on Monday (and too often I don't make it in to work).  And I do the same thing with after work - people want to plan stuff after work or my son has meets and practice and it just kills me.  Many people just don't seem to understand. 

The weekends are pretty much all about laundry and rest.  If I skip either I'm screwed for the following week.  Sometimes I take that chance just because I feel I need the "Me" time, even if I will pay for it later.  My life now is all about routines - that is the only way I can function.

Well, good luck!

[dawnbr123]

Hello Dawnbr123, and welcome to Sjogrens World. No one "flubs" (love that word) here, your post is great! No one expects everyone to do things in exactly the same way, and is if they've done it all their lives, each of us brings ourself to our posts, and that's just fine! The only thing I might suggest is that you start a topic in the social board, just the same sort of thing you've posted here, as an introduction that might get better noticed so you get the welcome you deserve!

I'm glad to see you are able to keep physically active, but active or not, those night shifts can be dreadful...sleep deprivation is so horrible.
[/q

Hi Dawnbr,

Let me also welcome you to the SJS World and family!  Please do look around as there are tons of topics to be had with scads of information that just might help.  If you don't find what you're looking for, just post as there is usually someone about that just might be able to help.

Wow, you do have a wild schedule and I thought mine was bad!  And then you bike a 100 miles a week?  Dang!  I sure wish I had your energy!

Come often, and I hope to be able to chat with you soon (the schedule can be reached by clicking the option at the top of this page).

Take care of yourself -

Patze

Thanks Patze...I do have a wild schedule but I love to stay busy. I went for a 25 mile bike ride with my husband and I've been completely useless for the rest of the day. I'm just soooo tired. I hate this. Just having a bad day I guess... Better days ahead.
I'm riding in a charity ride on Sunday. It's a ride that Patrick Dempsey (from Gray's Anatomy) sponsors. I'm doing the 50 mile ride so I have to rest up or try to rest up for this ride. I can do it! Hoping to have my pic take with him.
Thanks for your help with this forum and for your kind words and understanding. I really don't like talking about Sjogrens...I'm embarrassed that I'm not as healthy as I'd like to be...so I have not mentioned anything to people at work except fro a few close friends....but they, like me have never heard about SS...

[Patze]

Wow girl!  You are doing so well, lucky you!  Shoot, I used to hike a lot and walking three miles these days just kills me.

Good luck with the bike ride and do post the picture!


Patze

[dawnbr123]

I will post a picture of Patrick Dempsey and I....I hope I can get one...
I took a nap this afternoon cause I could not keep my eyes open and now I'm WIDE awake...
Got to get up at 5 tomorrow morning...
I'll keep you posted on my ride in the Dempsey Challenge taking place this Saturday in the
lovey town of Lewiston Maine...This is where Patrick was from....
Thanks...

[Bonnie]

I know how you all feel, used to work a 40 hour week, but they have changed my hours and I have to work 45.  They let so many people go I am the only full time member of staff.  The other girl I work with has small kids and is eligible for flexible working, so she starts at 9:30 and Finishes at 3.  and I start before 8 and finish after 5.  they are not paying for the extra hours and are giving me time to take later.

I am so exhuasted by Friday, I go home and spend the weekend in pj's trying to recover.  Also during the week come home put on PJ's after dinner. (sometimes even before dinner  )

Maybe I should have a baby and get some maternity leave 

[irish]

Dawn, Welcome to this site. Lots of info and great people here.

Boy, I am amazed at all you do on 4 hours sleep. Not only that but switiching from days to nights just screws up your circadian rhythm and that causes you to feel more exhausted and sleep poorly.

Is there anyway that you can work steady on one shift. This helps you maintain and adjust to the shift and establish a better sleep pattern. Also, I guess I would think about cutting back on the miles you ride bike. My gosh that is hard on your body. Exercise does build up strength and energy but I am concerned about all those miles. Do you have someone you can go to who can plan a good exercise regime for you. One of the most important things a person with sjogrens can do is get enough rest. Good luck and hope you can get things adjusted. Irish

[dawnbr123]

Thanks Irish...
I'm doing the Patrick Dempsey Challenge tomorrow...50 miles. My husband and two sons are joining me along with some
really good friends. I can't wait!
I am addicted to biking and skiing....Can't stop and won't let SS stop me. It holds me back some days but I'm on a high
lately and I'm not coming down from it yet. I actually feel so good today....I got a fairly good nights sleep...dreams included...
That's how I know I slept well...I remember dreaming...
I have no doctor yet....I see a NP...My rhemetologist left town... I saw him twice and really liked him...I'm looking for someone else
but I live in the middle of nowhere land....have to travel 4-6 hours to see someone good.
Got to go.....
Dawn

[Blue Kat]

I work full time and by Wednesday I'm usually wiped out, but force myself to keep going through the next two days, then spend my weekends recovering so I can go at it again the next week.  It feels like an endless cycle.

One sort of good thing for me is that just yesterday we were told that starting Monday the office will be cut back to a 38 hour week.  I'm financially OK so it won't hurt me too much in that area and I'm happy to have two extra hours a week that I don't have to be there, but I realize it's going to hurt some of the younger ones there.  Still...I'll need those extra two hours!