Wednesday, May 18, 2011

I Know People Mean Well, But Really?....

I'm not even going to talk about how I'm doing because nothing's changed and there would be no point in it. What I am going to talk about is the things people say when you are chronically ill.

So, today, I finally get up enough courage to tell my boss that I think I may be close to needing to make a change in my work schedule. What it amounts to is having someone else do the part of my job that I can only do when I go into the office. I believe I touched on it in my last blog update. Her response was "Oh, I think you are just having a bad day." What? Yes, I'm having a bad day, a bad week, and honestly a bad month! Before I go on, let me say that I love, love my boss. I love my job too. It's just that people do not get how sick I am. I'm sure I'm partly to blame for how they see me. I rarely miss work; I push myself to do everything that I nee to do, housework, cooking, bill paying, errands, etc... I guess it sounds like I  want to be a martyr, but I don't. If that were the case, I would do everything, then whine about it. How do  I/we find that balance? For me, I'm afraid it will be when I am completely house or, God forbid, bed bound.

A little background regarding my job....when I first started working three years ago I was already on disability. Little by little I told my boss more and more about my condition. As time went on, and my work projects allowed for it, I did more and more from home. At first, it was just five to ten hours a week that I was working from home, now it's about twelve to fifteen of my total of seventeen to twenty hours. I have felt tremendous guilt about worming my way into a work-from-home job. It really shouldn't matter as most of the work we do can be done from home and of the six or so employees in our department all but one or two (not including me) work exclusively from home. I guess I don't want to people to see me as someone who thinks she deserves special treatment, even though I sometimes do.

I think I will feel better about all of this once I see the Geneticist. Having everything formally diagnosed and a plan laid out in front of me will help me in so many ways. I will be able to get some idea of what my future will be like with this illness. That should help make planning, and discussing my condition and any modifications I may need, with both my work and my family, so much easier.

For some reason, I have this sort of "nesting" feeling. Those of you who have had children will know what I mean. I want to get out the old photos and organize them, clean out our closets, etc. It's as if I want to get things done now in case a time comes when I am unable to do them. The trouble is, I'm already at a point, at least at this moment, where I cannot do those things. And, not surprisingly, no one else around here really cares about getting these kinds of things done. It's a tough life for a Type A girl like me.

On the medical front, I am learning more and more about the Ehler's-Danlos, dysautonomia, Myasthenia Gravis connection. Say what? So, apparently it's not that uncommon for people to be diagnosed with Myasthenia when they have dysautonomia. Dysautonomia is a dysfunction of the autonomic nervous system. I hate to use Wikipedia, but in this instance it does have a good (albeit very brief) explanation of not only what dysautonomia is, but how it sometimes goes along with Ehler's-Danlos. Here's a link: http://en.wikipedia.org/wiki/Dysautonomia. I'm not lying when I say I've had nearly every one of the symptoms on the list on a regular basis. What's ironic is that one of the medications that they use to treat dysautonomia is the same one used for Myasthenia Gravis. Hmmm....another thing I can discuss with the EDS doc.

Well, I'm going to try and do some work and, then, hopefully, get to bed early. My sleep schedule is so out of whack.

Have a great evening!
Shari

For everything you have missed, you have gained something else, and for everything you gain, you lose something else.”~Ralph Waldo Emerson

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