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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.
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Lindsey Swem

June 2013

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