Thursday, May 10, 2012

Knocking on wood

In the last couple of posts I have discussed how sick I have been.  I'm going to change it up a bit....

I have felt, dare I say, good for the last few weeks.  Can you believe it?  I know I can't.  I was so sick for a month.  I had a few days within that month that I felt just okay, but I was really sick for the large majority of it.  Now, I have actually been feeling better than just okay; I have actually felt good for what I believe has been about three weeks.

 I just don't understand this disease.  Part of me says "Who cares what the reason is?  I feel good.  Just accept it and enjoy it."  However, the other part is waiting for the ball to drop... for the shit to hit the fan... for the other shoe to fall.  I even broke into tears when talking to my husband one night because I feel so good.  I know.  That probably doesn't make much sense.  I was crying because I know it won't last.  And for you, "keep a positive attitude" and "have hope" people out there, I do.  The difference is, I'm also realistic.  I have been living with this disease long enough now to know what my body does.

Today I had to test my body a LOT.  I had to pick up my daughter from school because she was not feeling well.  (A migraine.  Poor thing.  I know how that feels and I felt sooooo bad for her.  This was worse than any others she had.)  I knew I was going to have to use more energy than normal taking care of her.  When I got to the school, my chair lift would not go down.  I tried and tried and it just kept sticking in the same spot.  So I had to walk into the school to get her.  Then I had to take her to the doctor.  I hadn't taken her yet for these migraines because they have all gotten better with a couple of hours of rest and advil.  Well, my wheelchair lift didn't work there either.

A lot of people think the wheelchair is just to save me from having to walk.  Oh, it helps with a lot more than that.  Imagine taking your child to the doctor.  You have to walk from the car into the building.  Then you have to stand at the front desk to sign her in.  Then you go sit back down until they call your name (so there's walking from the desk to the waiting room and sitting down and then getting back up again).  When they call your name you stand at the desk while they make sure all of your information is correct and have you pay the copay (standing for 3-5 min.).  From there you go back to the waiting room to sit back down. Then they call your child's name and you have to get out of the chair and walk back to the room and sit down again.  Now this doesn't always happen but I was getting up and down out of my chair to go to the sink to get my daughter a cool paper towel to put on her forehead.  Then there's, of course, the walk back to the car.

See, if I had the use of my wheelchair, I could have avoided using energy for all of that walking, standing, and up and down out of chairs.  It makes a HUGE difference, especially if I have to do it at multiple places.

So, after picking her up from school, taking her to the doctors office, and picking up her prescription (which was easier said than done but I won't go into that long drawn out story), I should have been in the bathroom vomiting followed by laying next to my daughter complaining of the same excruciating headache she had.

However, lucky for me, that wasn't the case.  My muscles were twitching.  My pain was raising rapidly.  And my muscle weakness and fatigue were increasing as the day went on.  But it shouldn't have been increasing... it should have hit me like a ton of bricks.

What the hell????  I don't get it!  I'm not doing anything different that I know of.  I'm not even on the mito cocktail.  I quit taking that when my GI problems got bad awhile ago because I was struggling to get enough food down besides trying to get 5 pounds worth of pills down as well.  (okay, that's a bit of an exaggeration, but it was a lot of pills)

I'm not making any changes, why am I better?  Who cares, right?  As long as I'm better....  Why ask why?  Try Bud Dry.  (budweiser did their job however many years ago with that damn bud dry commercial because every time I use that sentence "Why ask why?", in my mind I say "try bud dry"... props to you budweiser)


So for now, I'm just living my life to its fullest and enjoying this time I have feeling almost human.



1 comment:

Rusty Hoe said...

I'm going to do a happy dance for you because I know how precious those times are. It can be so hard to understand the rhyme or reason why we get good days and why we get bad days. I often can't pinpoint a reason for either. The uncertainty plays in my mind. I'm feeling a little better tonight myself, but part of me wonders "how long?", "will it last tonight?", "will it be back tomorrow?" etc you just never know. Sometimes you have to make a concerted effort to silence those nagging voices and just enjoy it whilst it lasts. I'm going to keep my fingers crossed that for you this lasts a lot longer :)