Tuesday, October 27, 2015

Life and Work and Sjogren's

I like Angry Orchard brand of cider best. But then, that's just me. 

Every now and then, mostly after I've enjoyed a cool, fizzy, and refreshing glass of hard apple cider, I let myself daydream about going back to work. If I have had TWO cool, fizzy, and refreshing glasses of hard apple cider, I fantasize about throwing my stethoscope around my neck and slipping into a set of scrubs, then zooming off to my fabulous job in nursing as........well. Right about here my fantasy begins to crumble around the edges. Because even while under the influence of fermented apple juice, I still realize my huge physical limitations with respect to employment. As in It's Just Not Going To Happen, Julia.


Bev and I went shopping today, and I couldn't physically walk through two stores without breaking out into a soaking sweat and my knee screaming. And then we all know what happens to my brain after I've expended too much of my energy reserves, don't we, hm? Yes, we do. Repeat after me:

Tired Equals Stupid.

So I just can't for the life of me figure out how I could possibly be successful in nursing given those limitations. I'll bet that everyone reading this has had some kind of similar thoughts regarding employment in any kind of job.

Which brings us to another topic, which is -- if Sjogren's syndrome does disable you leaving you unable to work, how does one cope with the tidal wave of mixed emotions that arrive with this decision? I continue to battle guilt, anger, frustration, and envy of others' health and energy and fulfilling jobs. Along with huge relief that I don't have to fight my disease to accomplish any kind of success in the workplace.

Are you able to work with Sjogren's? Have you had to modify your job or your home life to make working.....um.....WORK? And if you aren't able to work, how did you come to peace with that reality? I would really love to hear about your thoughts and experiences, so share them in the comment section below.

Christine Molloy, nurse, author and blogger has been experimenting with balancing her life/Sjogren's/work schedule. You can read her most recent post on her blog Thoughts and Ramblings on Life, Love, and Health here:
I've been wanting to do some blog posts about work and chronic illness and I've wanted to write a little about my new job, so I guess this is as good a place to start as any. 
As I've mentioned previously, I am in the homestretch of a very challenging and difficult month schedule wise. I am really hoping, that things will settle down a little for me once we go into November. I am definitely not getting the recovery time I physically need right now. 
That got me to thinking this morning. I typically work two days a week for a total of fourteen hours. I also sometimes work a third day at my substitute school nurse job although lately that is rare. I am working three days this week. I honestly don't understand how people with chronic illnesses like Sjogren's (or any other illness) work full-time. I say that because all along that has been my ultimate goal: to get back to a full-time nursing job. I started with subbing, now I work part-time, and I was hoping full-time would be doable within the next year or so. Continue reading here
Keep us all posted, Christine. 


Vicki said...

To work or not to work, it all depends on your own personal circumstances. I personally have to work since I do not have a partner who can support me nor do I have vast amounts of money that I can retire and just deal with my health issues. When I was diagnosed with Sjogren's it was during the last recession and I had already been laid off my previous job so there was no option to go on long term disability on their health benefits :-(.

I'm a risk analyst, so fortunately I sit at a desk and work on a computer, unlike other occupations (e.g. nursing) where you are on your feet running around all day. I'm also fortunate that I live in a big city and we have special transit services for people with mobility issues that will take you door to door where ever you need to go for the same price and the regular transit, just need to book your trip a day in advance. If you are going to work on a regular schedule it can be booked automatically on their web site. This service is a life saver since it has take the stress off of me in terms of driving to work, trying to find parking, etc. Also not having to deal with the hoards of people on regular transit. the service uses taxis, mini-vans and mini-buses and usually the most on any given trip are 3 people.

I pay someone to come in and clean my apt. since just the thought of cleaning makes my body comatose. It may not be to the standards that I once use to keep but it's OK. I also don't cook fancy or elaborate meals any more. The simpler the better is my new motto. Weekends are for rest and naps.

I'll be honest it's not the way I had envisioned my life at 59, but it is what it is. I think anyone who is dealing with a major illness ends up having to make choices and compromises whether we want to or not. The key is: "Coming to terms with the choices that you do make and realizing that given the circumstances, you have made the best decision for yourself."

Nan said...

This is something that we who live with chronic illness struggle with often. Our identifies and purpose were bound up tightly in our careers, and when we are no longer able to work through no fault of our own, we can't help but feel "less than". What is the first question new people ask when you meet them? "So what do you do?". My reply often sounds like "Ummmm. Not much."

For five years I have been unable to work thanks to illness. I struggled for at least a decade before that, reducing hours to part time and even changing careers to a less demanding type of work. All I did was work and lay in bed. At some point I knew it was time to pull the plug. And I just held my nose and did it.

But that was just the beginning. And every day I have to remind myself of all the things I am grateful for. Sometimes that list is short. But there is always something.

We are selling our house and moving to a condo so I can use my limited energy on other things, not the yard work and snow shoveling. Meals are simple, often using a slow cooker. My home is organized and clutter free, never as clean as it used to be, but orderly.

I work on acceptance and gratitude. I try never to compare myself with others because my experience is unique to me alone.

And if today is not a good one, tomorrow is another day!

Nancy Joyce said...

Sjogrens is a thief that crept into my body and is slowly robbing me of me. I am still able to work full time at a demanding, social services job that I usually love. The work is getting harder due to static gov't funding, local population growth and more and more complex needs as well as my decreasing energy. I am so tired most of the time and often wish I could just not go to work in the morning but once I'm there I feel purposeful.

Couldn't do this gig without that great man I married. The house is sorta clean, every once and awhile I feel great and blitz it. I entertain less often and find I need a recovery day afterwards when I do, I no longer volunteer on any committees which saddens me and I don't exercise like I used to.

Screwing up my courage to take a financial hit and reduce my work hours so I can reclaim a bit of me.

Anonymous said...

I have been studying for over half of my adult life. I'm currently on my second master's degree so that I can teach. I enjoy teaching and need a stable career at this point. However, I am not certain that I can do it. Just studying full-time and working for gas money has me so tired that I nearly had a head-on collision the other day. The scary thing is that I didn't feel any more tired than usual. I am bargaining on just being able to get through the first year and then things get easier. No, I won't have a life outside of work but I will be doing something important, until I can't anymore, at which point I will probably be very happy to quit and live the contemplative life. ;)

Anonymous said...

Every day is a struggle. I wake up exhausted, go to work, then return home even more exhausted. My rheumatologist is wonderful, but focuses more on my RA than Sgogrens. He tells me my chances of getting disability are low due to the advances in RA treatment. I honestly don't know how I can make another 15 years of work.

Deb said...

I was diagnosed with Sjogrens about 2 years ago and my health has been declining rapidly. I work fulltime and school part-time which has me completed depleted of energy. I don't know what to do in terms of work as I can't concentrate on my job and because of my dry eyes and photosensitivity it's difficult to read most of the time and have trouble driving to and from work when it's dark. I have trouble sleeping and that just adds to the fatigue as I have to wake up at 5am for work. I am single, live alone so I don't have that partner to help out with bills/rent etc so I don't have a choice but to work full time. I'm in school part-time to change my career, which I had started about 4 months prior to being diagnosed so I hope to be able to work in my new field, which will bring in better money and I can work for myself. So I hope at minimum when I'm done school and leave my current job that I can have a better quality of life but this won't be for a little while and in the meantime I am barely hanging on. I hope to get a short term medical leave if it's granted by my specialist.