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For several weeks I've seen more than the average amount of commercials for "Wayne Wright," the social security disability law firm.  They always get me thinking about what work life balance looks like for someone with an invisible illness, or perhaps any illness. 
I've tried over the last year to explain to my manager, because he asks out of genuine concern, what it's like.  He's healthy and his family is healthy and there isn't a good way to explain the intricate dance of my life, all parts of it, and my disease. 
My review is tomorrow (thank God). That will hopefully help some of this self-doubt I've been feeling. 
But back to work life balance. I'm not sure how to have a life at this point. It started with James' inexplicable vomiting for months (finally explained=gallbladder) and ended (in a way) at my finally seeking help and treatment for the crippling pain. I've been trying to keep my job - so, before Aiden I would come home, cook, do some cleaning and then hit the sack and attempt to get a good nights sleep. Post Aiden it means I come home and pray that he's not too active and I can get a little rest before hopefully getting some sleep. 
I can't garden, go places, spend time with friends, cook dinner, or do more than a few minutes of cleaning without eating in to the "spoons" I need for work or taking care of Aiden the next day. 
Aiden definitely needs fewer spoons than work does. 
What I'm struggling with is that while I feel blessed with my husband and kid and job, I would like to be able to have more life with out fear of losing my job. In my head it goes something like this: "I want to spend the day out with Aiden (or go to the gym or go camping or take Aiden to a park, just him and me, or garden) but tomorrow the cost is I come in "drunk" for lack of spoons because no matter how fun that thing I want to do is it costs big time for me."  
If one of my co-workers was alcoholic and came in drunk or hung over all the time because they made choices to "have fun" the day before, I'd not feel too odd if they were fired. 
To me getting enough rest to perform your job is part of the contract with work.  Just like cutting the booze off early on a work night would be. 
I like working a lot, I do. I even have found that I'm coming around to liking my co workers. But I desperately need life balance and I can't have that with the fibromyalgia. 
Some days I think I'd have rather have cancer because it's curable (treatable) or it kills you (I  don't want the death part - to be clear I'm not passively or actively seeking my death).  people understand it - you have signs on the outside - you're ill. People get that. It's hard to wrap your head around this life altering thing that's now you. They can fix it. The "treat the symptoms" is right out for me - I can't work and take those drugs. 
So I guess what I'm looking for is other people's thoughts on this. 
Is it fair to want a life that impacts my ability to work and get to keep my job? 
Would I have been a leech on benefits if I hadn't fought tooth and nail to keep my job and collected my disability, and then have a life? 
Perplexed Lindsey is perplexed and a little heart broken that  the fibromyalgia is not going to ever be fixed.

Date: 2012-09-27 03:50 pm (UTC)
From: [identity profile] aronal.livejournal.com
"If one of my co-workers was alcoholic and came in drunk or hung over all the time because they made choices to "have fun" the day before, I'd not feel too odd if they were fired."

You have great perspective on your situation and a very mature outlook. It pains me that you are so young and short of some miracle cure you may be dealing with this for the rest of your life.

My stepmother has Lupus, when she was diagnosed 30 years ago the life expectancy was about 2 years. Thirty years later she is still grinding along. She has refused to file for disbility even though she has not contributed finacially to their household income for many years. Her pride refuses to admit that she is disabled. As much as I get angry at her for running through my father's savings and retirement funds, I do admire her for refusing to give up and go on the dole.

Then again she isn't trying to raise a child.

You have to think of not only what is best for yourself, but what is best for your family. Could you get by on disability and Jame's income? Would the extra time you spend with Aiden and pacing yourself for all the things that need to be done around the house be more valuable in the long run than working at the fruit bowl?

Sorry I don't have answer for you, the invisible disease thing is so hard to relate to for anyone not in it at the moment. You have my support and sympathy, let me know if there is anything else I can do to help.

So much going on inside so little time to type

Date: 2012-10-11 04:58 pm (UTC)
From: [identity profile] perfect-drug.livejournal.com
Thank you for your thoughtful response

I don't like the thought of me being "disabled" either but i'm not one to let pride get in the way of caring for my family.

The thing of it is right this second, James is on Medical Leave from the fruit bowl. he's literally not fit to work his choice was Medical leave or get fired.

It's the same blasted problem i had with them about 3 or 4 years ago

In that case i just stopped taking my meds and just deal with the pain, and James can't do that.

So I'm the most functional bread maker in the house.

If James was able t to go back to Work then i could think about it.

MY family would be 1000% better off with me at home with Aiden and house cleaning and home making

I had several responses that tried to argue to me ( on FB) that it's unfair to compare it to alcoholism but really it's the same thing. But really it is to me and i suspect it would be to the fruit basket.


I'm so thankful this wasn't lupus - we really thought it was there for a month or so.

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Lindsey Swem

June 2013

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