"Seriously?"

[sleepy]

Seriously, how do you people work? All I want to do is sleep!

[cport]

I'VE CUT DOWN TO WORKING PART TIME,ONLY WORK WEEKENDS NOW. GET PAID SAME AMOUNT WORKING WEEKENDS AS I WOULD GET DOING FOUR DAYS IN THE WEEK. ALSO CHANGED FROM LOOKING AFTER PATIENTS TO ANSWERING THE PHONES AND DEALING WITH PATIENT NOTES. I COULDN'T HAVE CARRIED ON OTHERWISE AND THE SISTER ON THE WARD I WORK ON HAS BEEN SO GOOD IN TRYING TO DO ALL SHE CAN TO KEEP ME IN WORK.

DESPITE ALL THAT I'M STLL SHATTERED ALL THE TIME AND BASICALLY FALL ASLEEP FOR AN HOUR IN THE DAY WHILE MY SONS AT PRIMARY SCHOOL AND MY DAUGHTER AT PLAYSCOOL XXX

[kathyl]

I switched from being a hospital social worker to being a school social worker.  I leave work at 3:00, get home, take 2 neurontins and sleep for 30 - 40 minutes.  Then I watch Jeopardy and make dinner do some things and get ready for bed and watch TV and read.   But right now I have 11 weeks off and I can rest and feel better.  I also have a lot of time off during the year.  I could never work a full time 8 to 5 job again.  Plus I love my job.  I talk to teenagers all day about life and growing up and making choices.  During my 11 weeks off I take naps during the day, visit friends, go night swimming and look through my telescope.  I was lucky to find this job and be able to keep working. Plus I don't want to quit because I am earning retirement through the state.
KL

[beverly jane]

I also work in health care, wish they understood,  I dont know how long I can keep it up. I have no time to rest. The noise is bad. and the running up and down the halls has me hurting soooo bad.  Thinking of cutting back to 4 days a week. forgot what home life is like. To tired to think when I get home... I also am waiting to read what others do to keep them working

[sleepy]

I was diagnosed 3 weeks ago after chasing symptoms for 10 YEARS! Did the same run around that I have read from so many on this site. I had never even heard of Sjogren's. In the past I was told I had the Lupus/MS/CFS and depression, none of which did I have. Went to a new doc who listened, he sent me to a "Rheumy" who is excellent. Blood work shows Sjogren's for sure, an answer at last. I am currently looking for PT work as I know there is no way I can work FT. Gosh I am so tired. Most of the time my hands and feet are numb and I have all the other symptoms that everyone else is dealing with. Nice to know there are others out there that have this traveling disease that visits so many parts of the body (and mind).

[Linda196]

Hi Sleepy, welcome to Sjogren's World.

I still envy those who can work, I took medical retirement nearly 6 years ago, and still miss the job. Last time I saw my rheumy, and he asked the inevitable, "so how are you doing?", I was able to say, "I think I'm getting better, I no longer nap twice every day, and the dryness seems lessened enough so I can talk and see!" He threw a bucket of ice water on me then, by saying, "you're also not working 5 twelve hour shifts a week or more, or running full tilt with no rest, bathroom breaks, or meals for 12 hours or longer, and you're taking 3 heavy hitting drugs!" Well, gee, I guess if you look at it that way, any one would feel better! Needless to say, I won't be getting his support to go back to work!

[dbab]

Seriously, how do you people work? All I want to do is sleep!

You know, I really wish I had an answer for that.  My only answer I guess is that I really have no life outside of work.  I come home and eat a bit and then get ready for bed.  My MIL, bless her heart, usually cooks dinner for us so that is one less thing to worry about.  I have a desk job so things can be worse but its still rough.  I try to get out a little on the weekends but its very limited and I can't do as much as others my age (I'm 33).  My family has adjusted to my limitations and I never hold them back from their lives.  I feel guilty that I can't go or do too much with them.  Maybe if I didn't work I could do more but this is how it is for me now as we need the second income.

[lesmom]

I have been lucky to find a job that is not as stressful as my last job,but it still wears me out. Unfortunately I don't have a choice- I have to work in order to have health insurance for myself and my family. I'm only 35 and we live on a ranch. My hubby is a horse trainer and in the summer when the boys aren't in school they stay with him. There are times that I come home and sleep for awhile before I make supper. I live in a fog most of the time. I am so hoping the rheumy has an answer when I have my 1st appt. the end of July. Ugh if only there was a miracle cure?!?

Hugs to you all,
Leslie

[Patze]

Hi Sleepy,

Let me also welcome you to the SJS World!

I'm with dbab, I too work fulltime and there are days where I drag myself in the door, feed the critter, and crash (I barely make it to bed).  Sometimes I'm lucky and catch a second wind and can do some extra things during the week, but that's not often anymore (even with Provigil, it helps keep me awake during the day).

I too try to get out on the week ends, and now and then kidlet stops by and helps me with the heavier stuff.  Thankfully, the major stores are fairly close so I don't have to drive a ton.

It's not easy, and I wouldn't wish this mess on anyone, but with the right combo of meds, it's doable.  Do you have a rheumy?  If you do, has he put you on any meds?  If so, what meds?

Hang in there and I sure hope that you feel better soon.

Take care -

Patze

[Crabcakes]

I don't get too sleepy, at least not lately. I am in pain so much, but, I am getting used to this. I mean, I KNOW I have limitations now, and plan for it. I try to nap/rest everyday after lunch. I'm VERY blessed to work for myself and at home, and hubby is retired. I can nap and work on my own schedule. But I KNOW I have to plan a rest and I go to bed early, by my old standards. I used to stay up till midnight, but now am in bed between 9:30 and 10 at night.

[TerriJ]

My husband and I own our own business.  That helps some, but he has had to pick up the slack a bit since I've been struggling.  If I had a regular full time job I don't know how I would do it!!!  My husband says I push myself too much as it is.  Sometimes I think I feel guilty for being so darn tired and hurting to the point that it affects the activities we can do.  We went out of town for a graduation and had a 6.5 hr. drive.  This was 2 wks. ago and I still haven't recovered.  I feel more exhausted.  Of course hubby says it didn't help that the day after we got back I cleaned house!  BUT, I did sleep 10 hrs. the next night and took naps the following two days.  He said that's not good enough. 

Gosh, I sure tend to ramble don't I? 

Terri

[Marmotte]

I don't understand why, but although I have been dx'd with SS, I still have a lot of energy. Maybe my day is coming.... I work 12-hour days, six days a week. Maybe I am just burning the candle at both ends. I am in the third year of a 4-year project demanding a lot of creative energy and a lot of time. It's fun and stimulating but I can't wait for it to be over. Then maybe I'll crash big time.

I do think a lot about how much I'd love six weeks in Mexico or Hawaii without having to drag my work with me. And usually by the time Day 6 of the week rolls around, I'm fairly tired. Tonight is an exception. I feel great.

Except for my IC which Huuuuuuurts.......

[fluffiebunnie]

I work 9am to 3pm and after work I normally have a nap on the sofa.. the children are 17 and 15 so do not need watching constantly.  I have fallen asleep in the afternoon for years without knowing why... I am still not diagnosed but it makes more sense now.

I work at a desk job in a tiny office so dont have to do much that doesnt involve sitting down and I work with friends so they help me.

[Redetha1]

I have a trip to make in about a week.  It is a seven hour drive.  I am dreading it, but know that I must go.  Anyway, I can understand the tired part about traveling that was discussed.  All we can do is put one foot in front of the other and push on...no other choice.   Hugs,   Redetha

[sleepy]

Hi Sleepy,

Let me also welcome you to the SJS World!

I'm with dbab, I too work fulltime and there are days where I drag myself in the door, feed the critter, and crash (I barely make it to bed).  Sometimes I'm lucky and catch a second wind and can do some extra things during the week, but that's not often anymore (even with Provigil, it helps keep me awake during the day).

I too try to get out on the week ends, and now and then kidlet stops by and helps me with the heavier stuff.  Thankfully, the major stores are fairly close so I don't have to drive a ton.

It's not easy, and I wouldn't wish this mess on anyone, but with the right combo of meds, it's doable.  Do you have a rheumy?  If you do, has he put you on any meds?  If so, what meds?

Hang in there and I sure hope that you feel better soon.

Take care -

Patze

Thanks Patze,

Yes I ended up with a attentive Rheumy, he has me on 400mg of Plaquenil. Here is the long story, I moved to a new state and told the first dr that I was tired all the time and my hand and feet were numb, he diagnosed my in two seconds by looking straight at me and saying, "you are depressed". What followed then was that old game I used to play with my siblings, "no I'm not", "yes you are". I tired of that very easily and never went back to him. I then went to another GP and told him the same symptoms, he said "hum, let's run some blood tests", he had me at "hum"!  My ANA was pos so he referred me to a Rheumy that said they would call me with an appt. Five weeks later I told my GP if they could not call me by now then that guy was not the dr for me. Onto the next Rheumy, he got me in the next day, took about 5 tubes of blood, went back a week later and bam the word I had never heard before in my life, Sjogren's. I held back the tears not because I was sick, but because after 10 years, I had an answer. I asked him, ok what do we do now? Plaquenil and another appt for July 23. It is a start.

I have read many posts before I actually posted myself. I am thankful for this site.