Need to return to work, not feeling capable

[violetopia]

I have 2 weeks left of leave from my job. I've been out for 6 weeks and I'm very, very grateful to have gotten this much time at all. But it's almost over.

There have been ups and downs during this time. Overall, I feel almost as crappy as ever. On some days my seizure count is lower than before; on some days it's higher. The main improvement (and it is a big one) is that my mind is clearer thanks to changing from Depakote to Lamictal. But a bad day is a bad day, as everybody here knows.

My job is part time with wonderful benefits--best health insurance I've had in my life. If I don't return, I will lose the job. (I don't have FMLA protection because of the part-time status.) My short-term disability insurance would just barely cover the cost of COBRA. I would still have all my monthly expenses--medical, phone, previously incurred debt, etc.

I have a little bit of money in the bank, and I'm hoping to sell my car. So in theory, I could stretch things out for 3-4 months longer. But the job would be gone and I don't know what would happen after that. On the other hand, the job is stressful. If I try to force myself back to it, I'm afraid the health outcome would not be good.

All this is giving my husband huge stress too. He already covers our home expenses & groceries; he doesn't have much extra in the way of resources. (His health insurance sucks, and adding me would cost almost as much as COBRA for my policy.) So I feel terrible about potentially losing the job for that reason as well. Plus, if I lose the job, I'm sure I'll have a very hard time finding a new one eventually. The long term could get really scary.

I know no one here has a magical solution. I guess I just needed to get my worries out there, so to speak. I'm very fortunate to not be dealing with this completely alone, trying to pay rent and utilities on top of everything else. Thanks for listening!

 

[Nakamova]

It's lousy being forced to choose between your health and your income. Are there any ways to dilute the stress from your job? Can you take any breaks? Even ten minutes of downtime with relaxation breathing can help. Listen to relaxing music? Maybe do yoga at home pre- or post-work? Whatever does the trick for you.

 

[Minkels]

Hello Violetopia (love the name, BTW!),

If you do decide to go back to work, there are some options for you under the ADA.

Since you are the U.S., you can request some reasonable accommodations from your workplace if they employ at least 15 individuals. Some of the more common accommodations that individuals with epilepsy might ask for include:

1) Shorter but more frequent breaks (this way, you are still getting the same amount of break time as anyone else, just more often so it's not creating an "undue hardship" or "preferential treatment").

2) Counting all consecutive days missed due to your condition as one absence (gotta preserve your job).

3) Access to a quiet place where you can go if you feel a seizure coming on and recover

4) Ability to remain at work after a seizure after recovering from the after-effects

**If you work with a computer screen, you might also want to request an add-on screen which helps reduce the flicker effect if this is a trigger for your seizures**

There are some good sample letters and information on different conditions/what can be included in a letter for for reasonable accommodation at the Job Accommodation Network--just Google it and it will be the first result that pops up. Also, make sure you put your request in writing and make a copy for your own records.

Whatever you decide, (going back to work or not), I hope it works out well for you!

 

[dbrownpilot]

Hello Violetopia.

I returned to work last fall after a temporal lobe resection in June. (I'm a band director.) I was afraid I couldn't perform well enough to keep my job, and I even had a speech pathologist tell me I probably couldn't do it. But I also had to have an income and insurance. Fortunately, my administration has been very supportive. They did as much as they could to relieve some of my stress and workload. In fact, I feel that they took pride in trying to meet my needs.

That's not to say that things weren't tough. Fall marching season requires a lot of extra work, and stress goes with it. I was exhausted all the time, and unable to hold many after school rehearsals. My memory is so poor that I can't remember kid's names. They literally have to keep name tags on their stands. My bands didn't win any competitions, and really didn't meet my standards.

However, overall, it was the right decision for me. Things haven't been perfect, but they are better than I expected. Although I can't perform as well as I want, I still have hope things will improve.

That is not to say that a return to work is the best decision for you. Only you know what is best for your situation. I'm just sharing my story about a reasonable beginning of recovery for me when I had a lot of fear and doubt when I started it.

I wish you the best in your decisions.

 

[Endless]

Violetopia,

I'm so sorry that you have to make this choice. Health vs. money/survival is a really tough one.

You get health insurance for a part-time job? That is incredibly wonderful. Most people don't get benefits at all unless they are full time. If you feel you could go back, you may want to try. Maybe they can give you fewer hours than you had before?

Is the company you work for a large one? If they are, there may be a different job they can move you to that would be lower stress. If it's a small company, I guess that probably wouldn't be an option, but you could try.

Have you applied for social security? It takes months (sometimes years) for it to come through. But once it does you would get Medicade, which would help out with the health insurance costs. (Medicare is free for people on SS, supplemental policies in our state run $85-250/mo)

I agree with the referral to the accomodation site. One of the rules where I work is you can't sleep on the job. When I go back I'm going to ask for an accomodation that allows for longer breaks and small naps, even if I have to go out to my car to take them (assuming I can still drive by then).

An occupational therapist can help you determine what accomodations you would need to be able to do your job well. Your neuro's office should be able to refer you to one.

 

[violetopia]

Thank you all for these excellent ideas. I should have included in my post that I am exploring ADA-related options and have requested some accommodations, such as a reduced schedule and flex time. Right now it looks like my employer will let me come back for 1 month at reduced hours, but then they want me to return to 30 hrs/wk.

It's possible that in a month I'll be able to do that, but I have no idea. I was having performance issues for a while before I went on leave, due to the seizures and side effects from Depakote, and I've been given to understand that the Big Boss will be watching to see if I can handle my job. They can't fire me for having epilepsy, but if I'm not capable of doing the job not even the ADA can force them to keep me.

Endless, my employer is quite large and it is possible I could go through HR to get something less stressful with a schedule I feel I can manage. That is likely to be my next step.

dbrownpilot, you are an inspiration! You also sound stronger and a lot more determined than I currently feel Good for you.

Some of my problems are surely psychological in that I disliked my job even before the epilepsy, and I have a long history of being afraid of/intimidated by male authority figures such as the Big Boss. Knowing that he's upset with me even before I go back has me scared. I'm going to have to learn to process that stress in order to succeed.

Anyhow, thanks again for your thoughts & support. This board rocks.

V.

 

[dbrownpilot]

I'm not any different than anyone else, including you, Violetopia. We're all just trying to cope with a really tough situation.