Balancing work and downtime

I was wondering how people find managing everything when they get any new symptoms or have a flare and things get worse, especially when working full or part time.
I find work is the worst I have a job and am on my feet all day for 20 hours a week at work, I find it lonely because at work no one else in my team has any health probs.
How do others get on.
I feel I have to put on a front in the bad days so as not to jeopardise my job.

That must be so frustrating! Are you in a job where you can access accommodations? Do you have any scheduling flexibility?

I work part time but am able to do some of my own scheduling and work in chunks of a few hours at a time. Even if I don’t have time to nap I’ll typically lay down to rest.

Hi Stoney,

Thankyou so much for your reply. Unfortunately I am about to be shifted to a new branch in a couple of weeks and will have same hours but a different schedule.
My current manager asked me when I found out if I had sjogrens did I want any accomodations and then she said that’s good when I said I didn’t need at the moment.
But that made feel that if I got accomodations it would be grudgingly which is awful.
So am not sure how to proceed at the moment :blush:

I would interpret that differently. She meant that it’s good for you that you didn’t need anything at the moment. I wouldn’t hesitate to ask.

Thanks Stoney,

Great to get another perspective

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Sorry, Mellow; I’ve been away and only just catching up on here, so just seen your discussion. Obviously not having been there to judge your manager’s attitude I’d say it’s really good that she recognised you might need some adjustments, so hopefully if you do need anything in the future, I’d ask. After all, she made the suggestion!

Hi Jules,

Thanks for your good advice. I have a new manager who is quite approachable as of yesterday.
I was moved to a different location as part of restructuring.
I feel I could ask for accomodations now.
Despite what my previous manager said I never felt comfortable in asking.

I have been on ST disability for 5 months. I was told Friday I was being laid off. I have applied for SSA it’s been 5 months nothing yet. I have very little support! My home I am thinking on how I will keep. Lost all my benefits. If they deny me I will have to do something! I have been a Medical coder for 20 years my eyes are a grade 3 . I have know other training. I am so at a lose.

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I’m sorry about this @Ali29047. I don’t know whether you’re using an attorney to apply for disability, but I would start pushing to find out the status of your application. Have you even been seen yet to be assessed?

You said your eyes are a grade 3. I’m not 100% sure what this means, but am thinking this refers to a specific level of vision loss? You may find that there are resources within your community to assist you in staying in your field of work, or to retrain you to a new field. I don’t know if you’ve checked into resources like this.

sorry to hear you are going through all this.
It is so hard when you are not well and trying to hold onto your job and then you can’t do it anymore.I had to go to a part time lower paid job which I can do but am lucky because my husband works full time so we can survive but I always feel like we are treading water.
I am in New Zealand so not up to speed with how the disability income works in the USA
But hope people have some ideas for you that live in the USA. We are looking at selling our home in the future as we have moved into a home with another family member who has had long term health issues and is on there own and was struggling badly , we have a shared laundry but our own kitchen lounge bedrooms etc it’s very small like a tiny apartment but financially it’s the best solution for us and the other family member at the moment.
Hoping others can give you advise about getting disability payments in your country