i am still new to this and last week i started feeling better my mouth was not all that dry and i felt pretty good
now this week my mouth is very dry again and i have to will my self to get up and get to work
i was wondering how many people with sjs still are able to work and if they do what tips they have for
being able to work.
and what to do if i cant work anymore?
I am in the same position myself. Alot of the time it's very hard to get up and go, but once I get up it's easier. It takes me two hours to get ready for work now, used to take about 45 minutes. If I didn't have a good night, sometimes I have to stop and rest, then continue getting ready. If you can, take a break at work. Put your head on your desk for 5 minutes. If you need to just get away and take a break and you work in place with no privacy, there always the bath room. Sometimes I go in and spend 10 minutes. Luckily I have a door to my office and we have a bathroom with a breakroom and couch. I started coming in later and working later. Now after everyone leaves I wil go in the bathroom and lay down for 2o minutes.
Good luck. My biggest problem is my eyes, as I work on a computer all day and they really hurt at the end of the day. The eyes are really affecting my job performance, and who gives disability based on severe dry eyes.
Hi :)
I don't work full time - I work part time. When my kids were young I didn't work. The 4 of them were enough work. I didn't get a dx when they were young but I'm sure I've had SjS since then. Getting them up and ready for school was hard and quite honestly, coping with them, their meals and general activities was harder than going to work.
I reckon it probably all depends on the kind of job you do how feasible it is to keep working. I'd go mad if I didn't work. I have a very low boredom threshold and my 'oh poor me' would come into play if I wasn't doing something to keep my mind off it!
Take care - Scottie :)
Hi Jas1223. I worked full time and was on call 24/7 until mid Sept 2008. I began experiencing what I hope is just a sjogren's flare and not a progression of my disease. I have dry eyes, mouth, and skin. However these symptoms aren't as troublesome as the extreme fatigue and brain fog. I was terminated in December when my FMLA ran out and I was unable to return to work. I have not been able to return to work since and I don't know if or when I will be able to. I don't know how anyone can work when the disease impacts them so severely.
Hi Jas,
I still work full time and have for years with the sjogrens diagnosis! I'm not going to say its easy every day, but I need the insurance and the money so I keep it up...some days are better than others and when I really cant do I can call in sick as I have been there long enough to have accumulated benefits. I also use FMLA time for appts, tests, etc.
I do take a lot of medication as well and feel that this has helped me even though I was NEVER a medicine taker pre sjogrens. Plaquenil and Provigel have been my lifesavers...not to mention all of the other meds I take for related medical issues.
Try to take it one day at a time and rest on your time off when you need to...there are many weekends I don't do too much but rest my mind and body and thats ok! Its what I need to keep going!
Yes, if I could try the Plaqeniel I think it might help!
Hi again :)
As I've said before - SjS is a very individual disease. It obviously impacts on some more than others. I am one of the lucky ones. I have aches and pains, a degree of brainfog, dry eyes and mouth but not totally but I am not ill. I'm not running low grade fevers. I don't have swollen glands. My appetite is fine - in fact I wish it was less. I think I eat to stimulate saliva - so that does nothing for weight!
I have been ill, but am now 'living with a condition'. I intend to keep working. Obviously if I get ill again - I'll rethink.
Take care - Scottie :)
Thanks to all of you for your comments. I too, have been wondering how in the world I am going to continue to work. I have never been so tired in my entire life! I also have Fibromyalgia and between that and the SS, I am truly exhausted. I have a one hour commute to/from work each way. A 10 hour day is almost more than I can bear some days. Luckily, I have my own office and some days I close the door and take a 5-10 minute breather.
My eyes are so dry from the computer screen that I can barely see by noon. I am going to get the plugs this week... I hope that helps.
I just wanted to say thanks to all of you for your support- I am so glad I found this site! I don't feel so all alone now.
Hi All:
I currently work full time and enjoy my job. Its been a long road but I am finally getting there. I did have to give up my old job because of the intense computer work and find something my eyes could handle. Luckily I find it rewarding and challenging at the same time. So my point is that while you may need to make adjustments I think work is possible. I personally feel that work really helps my mood. Good luck to you.
K
As Scottie said its a very individual disease. Just today I met someone else who has Sjogrens but it doesn't seem to impact her life very much. For me, I can't imagine trying to work a full time job. Luckily I'm on disability now. My full time job seems to be to deal with my health.
Steve
I teach full time (plus the rest!!) and have to continue working as I'm a single parent with one at Uni and 3 still at home. I think most days I wake up thinking 'I just can't do it today', but allowing myself plenty time to get ready and preparing for meals/doing laundry etc means that when I do come home I know I can rest for a while.
The biggest bonus for me is living just 6 mins in the car from work, at the same schol as my children and working near my parents. They are in their 80s so we call in each day on the way home. For me, consolidating as much as possible really works. I can't imagine an hour's travel to and from work!
I think we all find our way of coping. I grit my teeth and hang on till the holidays, but I know that there are times when being unwell means I have to take time off or cut back on anything other than keeping the job going. You will find out what makes work easier and harder and begin to work with that. Good luck Jas xx Ailsa
I was told id not work in nursing again, fibro, sjs symtpoms , flooring fatigue, thick brain fog and pain i cant describe.
I didnt even think id hold any job down as i seems to live life pernamanetly sore and exhausted.
i changed my whole diet, went on the candida diet, drinking alot of spring water, juicing veg, ,no gluten, red meat, sugar, yeast, preservatives, additives, not easy!!
I am back at work leading a normal life with dry eyes and dry mouth, i can live with that , its a nuisance, but its not something to hold me back, not to say it would work ofr everyone, but its working for me, if i eat gluten im floored again, eat what i used to and within hours im crippled in pain again, so i ll stick to my eating plan and have a pretty much normal life.im also drug free :)
T x
I work 9am-3pm Monday to Friday. I have always worked these hours due to the children. I am a single parent so have to work. I also have to be well enough to work as my company do not pay sick pay so I dare not have a day off work as I cant afford to lose money. This puts pressure on me to keep going even when I dont feel I can.
I work part-time in the bakery department in a grocery store. Lately I've noticed that I've noticed that I'm making alot of stupid mistakes. This last one I actually got written up for. They keep adding more for us to do and since I'm the only one working at night I just can't seem to get in the swing of things and get everything done. Was starting to think that maybe I'm just being lazy until yesterday when I tried to lift two flats of strawberries and almost dropped them, made me realize that whats really going on is I'm either in a SJS flare or a fibromyalgia flare or both with the wonderful brain fog included.
DWW
I am retiring from teaching this year. I hung in until I could retire at age 60. I will have to be without retirement money for one month until everything kicks in for my retirement but I have been saving for that. I teach special needs kids and just couldn't keep up. My principal is wonderful and understanding. She has let me leave early a couple of times when I told her that I was extremely tired. It has made it possible for me to continue. I have 5 more days to work. Yeah!!!!! I can't wait to sleep late. I am hoping to sub some just to have some extra money, etc. I will not have any of the paperwork -- just go in and teach and leave. It will be easier than have full responsibility. We are all involved in our struggles..but we are all still kicking...Hugs to you all. Good Luck to all.
I'm 26 and I was just diagnosed yesterday. I've known something was wrong for years, that I just shouldn't be THIS tired all the time. well I totally haven't been able to hold down a real job. In fact, the only job I can do is topless dancing because I can sleep all day, work 2 nights a week, and not show up if I just can't make it without getting in trouble. I'm lucky that I'm even able to do that, I can't imagine what trying to get by otherwise although I definitely want to try to accomplish my goals from college still. I just feel like I needed a diagnosis, for people to know that I'm not making it up, and now I can work on a plan to manage this. Now that I know I really want to fight it like many of you on this board do!
Hello LAU, welcome to Sjogren's World.
When you were finally diagnosed, was there any suggestion for treatment? The usual first approach is Plaquenil, and it's a life saver for a lot of people, although it takes some time to become effective (maybe up to 6 months). OTC treatments for dryness are most beneficial, but very individual, so each of us has to experiment to find the one(s) that work best for us. Meanwhile, as you've discovered, lifestyle changes that allow rest is very important, and you may find it helpful to "optimize" your nutrition and general health.
Get involved here, reading and posting, and never worry that anyone here thinks you're making it up, because we all understand very well.
LAU
welcome to the forum Honey.
Yup can relate to that feeling of exhaustion, as can everyone here, not easy.
Good your employers can work round you and you can rest during day, strange so many ppl have more energy in the evening with SJS and as like roadkill till then.
feel free to post up any questions or worries, or just rant, we all have and do
T x
LAU,
Just want to (http://www.freesmileys.org/smileys/smiley-signs046.gif) (http://www.freesmileys.org) you to Sjogrens World....read all you can or want to and ask any other questions that come up. We all understand here because we all live with the same "stuff".....just different levels of symptoms!
Welcome to the family!
Hi LAU :)
Welcome from me too.
Take care - Scottie :)