Mommy’s nap time too

Every morning I get up early with Ed, after tossing and turning most of the night, and try to sneak out to the couch so I don’t wake E. in the hope that she will sleep longer.  I fall back asleep on the couch until I hear either G. or E. calling for me.  I get up, get them what they need and then contemplate the day ahead of us.  Sometimes the very thought of the next eight to nine hours until Ed will get home just makes me want to cry.  It’s not because my children are incredibly difficult, though let’s be honest they are one and a half and almost three.  It’s not because I can’t stand being away from Ed for that long. It’s also not because I have so much to do that I hardly know where to begin and can’t imagine getting it done.  It is the simple fact that I do not feel like I have enough energy to anything other than sit here on this very couch.  That means no errands accomplished, no playgroups attended, no housework done, no anything except praying that I can make it until the kids nap time and then that becomes mommy’s nap time too.

Not all days are so bad.  There are days when we do go to playgroups, or the library, or just play by ourselves. There are days when I am extremely productive on the computer, working on my blog and new website (Next Steps 4 MS); I’ll go to a meeting about a fundraiser or to a self-help group. Some days I’m even excited about going shopping or walking around a lake with a friend.  I even occasionally go out with friends and attend my cooking club once a month.  I don’t want to forget about the nights we have people over to play games, which are often the only salvation for my sanity.  The day of the MS Walk:Columbia 2010 should not be overlooked either.  I was able to stay up from 6:30am to almost midnight, during which I walked a 5K and entertained people afterward.  About now I bet you’re thinking to yourself, “That doesn’t sound so bad. What’s she complaining about?”

You might be right too.  I probably shouldn’t be complaining.  There are many people with MS who live with far worse daily fatigue than I even want to ever have to think about.  The plain truth though is that most people with MS live with some level of fatigue not experienced or imagined by the normal, healthy person.  Those “not so bad days” I mentioned in the previous paragraph almost always come at a price.  Sometimes this just means having to cut the activity short or miss the next activity and take a nap.  There are very few days now where at least some amount of napping is not required.  Other times it is complete and utter exhaustion literally to the point of collapse.  I’ve actually had Ed scared a few times.  Now those times are probably my own fault.  I know that I now have limits to how much I can do, but I still manage to push myself far beyond on occasion.  It’s my obsessive/compulsive personality that forces mind over matter until the mind acknowledges that the event it was driving has ended and then it’s all over.

Mommy’s nap time has recently taken a more personal toll too.  My oldest daughter K. recently accused me of doing nothing worthwhile and basically just sitting at the computer all day and making everyone else do the work.  This is actually the watered down version of what went on.  It’s been a long time since I have cried so hard or been so depressed.  To think that any child of mine, especially the one who saw the severe exacerbation while I was pregnant with E. and the milder one in CA. last summer, would ever think that of me is heartbreaking.  Until a little under two and a half years ago, I was a full time paramedic and full time mother using my complete body and mind.  I no longer have that ability and, as much as it has taken a toll on those around me, I guarantee that I feel much worse about my loss of activity than they do, but since I’ve recovered at least 90% physically, all other symptoms are invisible to others.  They no longer understand that I still AM sick and am not able to do what I once could.  I’m scared now about my relationships with my children and what they do and will think of me.  Will they be able to understand?  I guess only time will tell.

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