SjS and Work

[SonicEm]

Having lots more symptoms just in the past year, my work is down to doing freelance part-time. I try to fit the work in around my good days, if I can. Sometimes I have to bite the bullet and either work at my desk or have a client meeting when I'm feeling so crappy and tired. I have sleep issues and I think it would be SO much better if I slept more.

How do you all cope with living with SjS and working at the same time? What jobs do you have?

[SjoDry]

Sadly, I have resorted to 5 hour energy drinks.  I am President/Owner of a small business.

SjoDry

[Scottietottie]

I've just been made redundant and will be job hunting when my arm finally heals up. I'd cut down to working part time though as full time had just got too much.

I was a youth worker with teens who had been put out of school. I'm not likely to get another job doing that as when the Council makes you redundant you cannot work for them again for 10 years. They are not hiring anyway due to Government cuts.

I don't know what I'll do next but it will be part time. Sitting around at home is driving me crazy.

Take care - Scottie 

[cargillwitch]

It is very hard with variable energy isn't it?

I am a nurse, doula and lactation counsellor . I work co-ordinating perinatal nutrition programs for First Nations Metis and Inuit here in Canada.

We live on 150 acre farm where we  board and train horses ( we have 8 ourselves) I also market garden organically- most of the acreage  is in  cash crops .

I work 30 hours a week off the farm, ( two hours commuting daily)but have full autonomy as to when I work them.This has really helped.

I had extremely high energy and productivity prior to the full brunt of sjogrens hitting so I am learning to adapt as needed.

I have learned all things change- if i feel crappy today that is not a reliable indicator I will tomorrow.When things are going well i remember to really enjoy it and do some things i might not be able to on bad days. I hope it balances the good and the bad.

[SueAnn]

I work full time in an elementary school as a counselor.  It is hard to push through some days I know, but when I get there I tend to forget how I feel and focus on the kids.  When I get home I crash.

I get through on imuran and Diet Mt. Dew.

SueAnn

[Autoimmunity]

I have rheumatoid arthritis.  Maybe sjogrens.  Had an endocrinologsit (I no longer see) tell me I likely had it, but there was no treatment..  Anyway, I have been having a bad flare for the last few months and I am EXHAUSTED!  I can barely make it through the day, I sleep most weekends, evenings away.  Not to mention they have put us back on overtime; kill me now!  Today I had a coworker/supervisor (not mine in any way!) tell me if I stopped partying so much maybe I would stop falling asleep at work!  She knows I am ill.  She is such an idiot!  Sorry, but she is.  How inappropriate!  Going to ask my doctor when I see him next month if he will put me out for a few weeks, a month? on fmla.  I currently have intermittent, but I am really struggling.  This goes against everything I am and I sure hope I have the nerve to ask!
Oh, I also have narcolepsy, so pardon me if I do fall asleep at my desk for a minute or two here or there...#$%$#%

[susanep]

I worked as a special education teacher until  I had to retire early in 2010. I held out as long as my body and mind could.

I did not have understanding people around me either.

susanep

[Autoimmunity]

I worked as a special education teacher until  I had to retire early in 2010. I held out as long as my body and mind could.

I did not have understanding people around me either.

susanep

That's my "favorite" part  - everyone else is tired too or everyone else has arthritis, just take an aspirin and get over it.  Nobody has any idea what we really go through, do they?

[lostone]

I was a electrician for 37 years before the weird started, in a year and a half I went from never missing a day of work to missing days at a time, got the SS diag, and had to retire, dryness and falling off ladders was not good for me, along with the neuropathy, when i put the car through the back of teh garage, I knew it was time to give up work and driving.  I wish I could have keppt working, God bless those of you that still can

[THE BRIT]

  I really am sitting there waiting to get fired and am convinced it will happen everyday I go in.  I have been getting progressively worse memory problems which means my work is slowing up.  I am a QA nurse in a homecare company.  The other QA nurse knows exactly what is going on, but has been having more work put on her partly due to me.  I also have the tiredness and due to the cold my arthritis and neuropathy are playing up so I am really struggling to get through the day and the 20 mile each way commute.  I also see a couple of patients a week, mainly at the weekend and on Sunday have to prepour the meds for three of them for ther week ahead.  I take a long time doing them but I am absolutely terrified of making a mistake.  I also have to order any refills so I have enough for the next week and have been slipping up with that too.  I also manage a pt's drain at home and have to flush it and change the dressing.  I am so frightened of giving her an infection.  I really have to get out of this job for a simpler one, but don't know how I would make it through an interview let alone learn a new job.  My financial planner knows what is going on so we are working on getting my savings into the best placew as I feel I will have to leave work before retirement age.  It is very scary.  One of my patients has alzheimers and we have about the same memory recall even though there is nearly 30 years between us.

[P.Trish]

20 yrs: Worked as an English/drama teacher until my dr insisted I go out on disability, just for the remainder of the year; this was in March, 2010 & I haven't gone back. I loved my job & the decision to retire early was wrenching. In retrospect, I know that I REALLY should have stopped working before the disease decided for me. I took ginseng to help survive my last 2 yrs of working. I also went part-time - this didn't work out because I was just working full time for part  time money I have less money (some retirement funds) but I am fortunate to be living off my husband. Teaching youngins' was not good for my immune system. I sing professionally in a trio - average one gig every other month, but it is good mad money (for things like warm booties & eye drops - hee hee). Evoxac has helped me to retain most of my singing voice, although I really have to plan ahead - extra rest. Thank goodness, the other singers are very good, as well as understanding. My main objective is to stay productive - this site has helped tremendously with so many suggestions, as well as personal stories of what they are doing. I still dream & ponder about ways  to earn money, but not I am not independently wealthy, yet:)

[Lesley_x]

I'm a dentist. It's not an easy job with sjogren's. There are so many aspects made more difficult by it - using your eyes a lot when they're dry, using a foot pedal when your hips and feet are sore, using your hands when they're sore, bright lights in tired eyes... and my gosh, the back pain!!

I decided very early on to work part time, or rather I was forced to. I work 3 1/2 days per week and still come home and fall asleep in my dinner. It frustrates my husband a lot!

It is very depressing for me that I have never really managed to work full time at my age. I will probably never reach my full earning or career potential.

[Myshkin]

Freelance part-time. Like you. I was allready freelance when I got the diagnose, but I have had to cut way back. Which is really pissing be off to be frank. That was not what I wanted to do with my life, and I am having a hard time coming to terms with it. I am running a great bussiness, and there was so much more I could do if I just had the energy to do it...

But I have recentlyt cut back to half-time and moved my office back home. That has helped tremendously. I have a small son and husband not to mention my health to consider.

I am waiting at the moment for the decision on my application for some disability insurance. The financial part of it is a great stress factor.

[MaryBee7]

I was a electrician for 37 years before the weird started, in a year and a half I went from never missing a day of work to missing days at a time, got the SS diag, and had to retire, dryness and falling off ladders was not good for me, along with the neuropathy, when i put the car through the back of teh garage, I knew it was time to give up work and driving.  I wish I could have keppt working, God bless those of you that still can

Lost, your story really sums it up!  "falling off ladders" and more...  hope you are as better as better can be now that you've left these stressors behind.   

[LisaMarie]

I'm a software programmer for a major University.  I love my job.  Technology has always been easy for me to pick up on and go with the flow.  Until the past 5 years.  I think that my mother's cancer and death was a huge trigger for my disease (although looking back I've had symptoms all of my life).  At that time, the fatigue/insomnia causing brain fog to be worse, made it really hard for me to focus and learn new things.  It scares me in my line of work not to be able to keep up.

But lately I've decided to focus on the things that I already know and not worry so much about the new.  I work with my boss on deciding where I do best.  I'm also looking at another positions in areas that I feel I am an "expert" on the work and hope to get promoted that way.  The new younger programmers can focus on the new technology as I can look at maintaining the current systems at least until I am ready to retire (hopefully in four years I can retire and then work at jobs to just maintain an income).