Wednesday, September 14, 2011

Regular Days ~ Mom stuff

School days with two in school are very different.

Last year, on really bad CFIDS days Katie could get herself going and be up on time and have a smooth morning.  I HATED that she ever needed to do that.  I'm feeling pretty darn good right now.  But I saw turtles, so of course I am.  But I have a lot of normal days ahead of me.  I don't know what those days will be like.  I hope they stay good.  But even a cold can turn that around for a while.  And my unfortunate work situation will continue to bring stress that will continue to impact me.  I think I'm seperated enough from it right not for my health to be more impacted by more immediate factors.  If so, I can keep getting up with the kids....and either way I will have to.

One school morning can pack in a regular day's worth of nagging and bickering all packed in to an hour.  It is easier to keep my CFIDS temper at bay when it is spread out over the day.  That part of things has gotten much, much better.  But in some ways, that makes it harder for the kids to see my symptoms.  I think they want to feel like I am getting better.  I think they can see the improvement, but I think they need to see no symptoms in order to for it to count for them. 

That makes it harder for them and me when I do snap at them.  Those are some of the things that make me such a different mom with CFIDS than I was before.  Of course I snapped at them before, but it was different.

There are moms out there that have had this for years.  Some of them have kids who knew them before and some don't.  Katie remembers, but I'm not sure how well Christopher really does.  And I don't know which is harder.  I want Christopher to really, really know who I was before. 

But I want him to see that first hand.  And it is so very hard to let go of that.

I'm still just as torn as I have always been between acceptance (as a necessary aspect of effective coping) and a firm belief that I am going to recover.

That is one of the reasons I haven't seriously considered applying for disability retirement, even now that it is the only option I'm being given.  There is so much I can do and I want to focus on what I can do.  I am one of the lucky ones when it comes to this disease.  Not just because I can fly to Hawaii (for free) and see turtles.....but it does illustrate my point.  When my family went last fall, I spent a great deal of time in the hotel room resting (and ironically that was back when my employer was allowing me to work).  This time, it was rarely to never my health that limited how much we did (though hiking and running and climbing things was out).  That would not be the case for most people with this disease.

This is why I am blogging....this is cathardic and this disease is completely life changing.  Even the good days and the positive thoughts are all within the context of something really horrible.  Even at its best it takes away most of your life.  But still I am lucky and all the time I spend remembering that is worthwhile.

I am going to take a nap, then filter through my turtle pictures from the last day of my trip.

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