Hey to all of you! I hope today is a good day.
I have to say, that I haven't had a really bad flare since going back to work. My first two weeks were hard, but not as bad as my July was...that was before meds.
I think the plaquenil is actually starting to help as it seems to subdue my symptoms so they are manageable. I am thankful for that b/c I know not everyone is so lucky.
The biggest issue I am finding now that I have been back a month is that by Thursday I am feeling wiped out. It then can take me to Monday to feel better and more refreshed.
This is how the cycle goes. Is this pretty common? I am asking b/c I am trying to figure out ways I can help myself through the days that are harder.
The other question...I have noticed my mind wanders so much more now. I can be working on something and have a thought about something else I need to do and start that. Then I realize that I haven't finished the other and it is a back and forth or circle that I am making getting my work done.
It is driving me nuts b/c I have found a few times that I have forgotten to finish a task or I feel very overwhelmed as I run around in circles getting it all done.
I often feel panicked at work with the looming list of things to do and have to tell myself to breath, so glad that I did meditate in the past.
I am one of those that with any type of worry or stress I immediately feel symptoms coming on, weakness. Any thoughts?
Last....I have to do a lot of things where I hold my arms up for a little while (writing on a board, holding up a book) and I find even brushing my hair, my arm muscles feel like I just lifted weights for 2 hours. They are tired right away.
Any exercises you recommend?
Sorry so long...I tried to break it up. These have been on my mind for a while...just haven't had time to sit down to write.
Oh, goodness! I could have written your post! ;D
The longer I was on Plaquenil, the better I felt. It took over a year, but I now feel almost back to my old self. Keep taking the drug. I used to die by Friday and took all weekend to recover. My arms couldn't hold up the hair dryer----etc, etc, etc.
Now those symptoms are pretty much GONE.
I know it may very well not last, but I am enjoying this "remission."
Good luck to you :)
Hi Littleme,
I still work full-time, and by Friday, I'm still wiped out. I usually spend most of Saturday trying to recuperate because I know that come Sunday, I get into gear to clean up, and get ready for another week.
Unlike Babs, I still have symptoms, but the meds sure have helped a lot, and for that I'm most grateful, but it was a long haul to get where I am today.
Hang in there, and hopefully you'll start to feel better soon!
Take care of yourself -
Patze
Hi Littleme :)
I'm in the fortunate position finacially of being able to work part time rather than full time. I deliberately applied for a job that was for 22 and a half hours a week. I was managing that OK but still felt pretty wiped out by the weekend.
Mid summer - without consultation - they changed the job from 22 and a half to 27. Five hours a day and two hours extra one day a week. To be honest - I'm struggling with it. Fridays are a nightmare. We work with very challenging young people and twenty hours a week with them was enough! There is precious little time for preparation of any kind so it tends to be done in unpaid time. :-\
I'd already pulled right back on any kind of social life but i did used to go to a trivia quiz once a week with friends. I'm too tired to do that during term times now and only see them during school holidays. I'm not a teacher - I'm a youth worker and we get kids the school really don't want any more. They get sent to us for 'alternative education'. We used to deal with about six at a time but the numbers have been doubled and the staff reduced. I really don't know how much longer I can do it for but at the age I am, I would find it difficult to pick up another job now.
Take care - Scottie :)
Hi Littleme
I'm still working full time - although I have had 60 days off in the past year, due to various surgeries. However, when I went back after the last sickness spell, I made a determined effort to lighten my load in other ways. So, now most weeks I do my grocery shopping on-line. I've also started to pay someone to come into my house for 3 hours each Friday, to do the heavy work. Together with the Plaquenil, which I started in July, I think these things are making life more bearable.
When I arrived home form work yesterday to a clean house, and groceries in the cupboard, I felt so tired, but wonderfully relieved that I could just spend most of the weekend with my family, going to church and cooking Sunday lunch - heaven! Wish I earned enough to get someone to do the ironing though ;)
By the way, I decided to try this, rather than cut down hours at work just now, as reduced hours means reduced pension, and my pension will not be very big to start with. However, I doubt I will be full time for many more years.
Kathyx
Kathy, isn't it a great feeling to come home after the cleaner has been there and cleaned the house? When I was working, I had someone come in every 2 weeks and do a quick clean through the house. That night going home was my favorite day of the week. I've been off work for 5 years and I still miss this little perk. Lucy
Lucy
I can't believe how much difference this has made to our lives. It's hard acknowledging that you can no longer do 'everything' yourself, but once you get over that, it's good to be able to lose some repsonsibilities.
Kathyx
Thanks everyone. I wish a cleaning lady was in the budget. We can't afford anything extra right now, but when we can...I am going to ask for it. I cleaned all day yesterday, ran the kids around to b-day parties and taught a class this AM...I am feeling icky right now. Going to go to bed for a little while before the other b-day party. (family one this time)
I will rest when I can.
Littleme
I feel for you with small children. Ours are grown up with children of their own now, so the budget is slightly more generous. Enjoy your rest.
Kathyx
To those with younger children who are working, it's hard to find enough money for a little household help. After the kids are grown and expenses are less, that's when it's usually possible to find enough to call in the cleaners! Since I've been retired (on disability) but now it's social security, I can't afford to have that done. I sure miss it and by the looks of my house, you can tell I have no cleaning lady come in now. My husband is very good at pitching in though, the dear. Lucy
Littleme-
I can tell you are a teacher! I feel the same way once Wednesday or Thursday come around....wiped out! Especially since I teach 1st grade. The plaquinil really has helped me as well but it has taken nearly a year. It has especially helped with fatigue and joint pain.
Good luck to you,
Karen
I'm new to this Forum...so you'll have to forgive me if I flub up.
I've had Sjogren's now for two years. I work full time in a paper mill working 12 hour shifts which requires me to work night shifts and then switch to day shifts with a few days off in between. After a 12 hour night shift I'm so tired ....my eyes want to fall out because they are so dry and I'm so tired that I can hardly make it home to bed. Then when I do crawl into bed I can only sleep 4 hours at the most. I find myself falling asleep everywhere.
I do stay physically active riding my road bike an average of 100 miles a week. I've dropped 30 pounds in the process which I'm extremely happy about....
My biggest problem with SS is my paratoid glands...They swell up a lot. Every day I have some issues with them...some days it's not too bad but other days I
can hardly stand it. I never know when they will act up...It's very painful..
I take plaqinil and neproxin twice a day.
Thanks for listening....
I am awaiting my diagnosis and yet to start treatment. I have lost my job because of my medical condition. It has been extremely difficult on me... I have always been a work a huge amount of hours, manage a household and tend to 3 kids... and cook gourmet meals. Now I am happy if I make a meal.
I think a big part of the problem is that I have caught just about every cold/flu in the past 12 months. Working in a building right next to the child program I don't think has helped. I have always worked in social services and if I ever return to work I want my own little office away from anyone else LOL.
I just wish I could start plaquenil or something at this point.
-Y
Y-
I wish you could start something for your issues too. I am not officially diagnosed with SS, but my doctor said all symptoms point that way, so he went ahead and began treatment. So glad b/c I am beginning to realize how awful I was feeling. I still have my not so good days, but my symptoms have subdued greatly.
Mom16....right there with you, but 2nd graders. Thanks everyone and good luck to you all as you work/don't work or whatever you do. :)
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.
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
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 ).
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.
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. :)
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!
Quote from: Linda196 on September 27, 2010, 04:38:42 AM
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.
[/qQuote from: Patze on September 27, 2010, 04:46:10 AM
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...
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
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...
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 :)
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 ;D
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
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!