Wednesday, May 4, 2011

A Day (Week) in the Life

  I should take it easy this week. I need to be well rested for Aaron's graduation this Saturday. So, what did I go and do? Pilate's! That's what I did! I've thought about trying it off and on for a few months now, so when Elizabeth found her Pilate's DVD and asked me if I would do it with her, I couldn't say no. I'm trying so hard to find something we can do together. I did Pilate's for all of maybe 5 minutes. OMG!! Yeah, well it was a dumb thing to do. I should have at least not done as many reps. So, I am paying for it today. I was feeling pretty bad before I did Pilate's and now I'm feeling worse. Ugh!!

Being chronically ill means you do have to think about nearly everything you do before you do it; it makes life much more complicated. For example, most people who attend a graduation would probably make sure they had everything they need ready to go the day of or maybe the day before. And, what they need would probably be a short list consisting of a camera, video camera, binoculars and for women, their purse with makeup and what not (love whatnots). As someone who is chronically ill here is my list (so far):

Medications (7 different types, pills for nerve pain, severe pain, mild pain, MG meds, anti-depressant, anti-anxiety,  and meds for GI issues). A pillow and blanket to make the ride more comfortable will be a necessity.  An ice pack and Ben Gay for muscular and joint pain will be helpful. I should also bring my cane, ankle brace, and possibly my knee brace. And, a change of clothes in case whatever I'm wearing is too hot, or too cold. I'll need some Powerade (to help with episodes that I can't  explain), and snacks for low blood sugar episodes, all of this is in addition to the cameras and binoculars. Of course, I'll take my Kindle along because we will be getting there early and will have plenty of time to kill. I'll also take my cell phone that has Internet access for the same reason. Not only will these items help kill the time, but they are comforting to me when I'm sick. They help take my mind off of things, plus they are a connection to the outside world.

In addition to figuring out and gathering what I need to take, I also have to start thinking in advance of what I should or should not be doing ahead of time. I purposely went to visit my mother yesterday because I knew that it would be too much for me if I went towards the end of the week. It's the same thing with grocery shopping and work. We normally like to go on Friday morning, but it's better if we go tomorrow instead. For work, I need to be working extra hours now to make up for the hours I won't be working on Saturday (or Sunday probably depending on how I'm feeling). The problem is, I'm having trouble working extra hours now because I'm not feeling very well. I'm so stressed out! My plan now is to stay in bed all day on Friday. Then, Saturday morning I will probably take some Tylenol to ward off any severe pain (I'll also have my meds for the stronger, breakthrough pain with me) before we head out the door.

All of this for a day away! Don't get me wrong; there's nowhere else I'd rather be than to see our son graduate (with honors and two degrees!) from college. I am so very proud of him. I just hate that my health is so bad that I may not get to enjoy the ceremony. We are hoping that I'm feeling well enough that we can stop at a beautiful restaurant that we have been eyeing for four years now. It's on a lake in a very scenic area of the Hoosier National Forest. It would be so nice for all five us to be able to sit down and enjoy a meal together and at such a lovely place, that's a rarity these days.

As if the prep for a "trip" isn't enough, the after-trip will probably be even more intense. The few days after the ceremony, will be filled with pain meds, resting, and tremendous guilt and disgust with my body for failing me. I guess that's a little dramatic. I realize my body isn't failing; it just seems that way sometimes. I just hate that what should be a joyous occasion may be filled with pain, weakness, and fatigue.

I'm sorry if this seems like a downer posting, but I'm determined to tell it like it is! My friend Cathy has a blog where she is doing just that. It's not that we want people to feel sorry for us, it's that we want people to understand what it's like to be us.

Well, I'm about ready to drop off to sleep, so I'm going to end this here.

(((HUGS))) Shari


  1. First of all, I am so excited for Aaron's graduation this weekend! Super exciting for you and your family! I remember when he graduated from HS, hard to believe it has been four years.

    It IS amazing what is involved if we plan to "extend" ourselves beyond our normal routine. You would think we are preparing for a biking tour across Ireland. I know how organized you are, so I am sure you will have all of your bases covered. I understand your concern about being able to enjoy the moment. That is a constant fear for people like us.

    Sounds like you are doing a great job at metering out your responsibilities between when you wrote the post and the graduation.

    I am looking forward to seeing the graduation pictures on FB. Oh, and I hope you can all go that that beautiful restaurant to celebrate!

    Gee, I guess I should have sent you an e-mail :)

  2. Hi Cathy! Thanks for writing on my blog. It's nice to know that somebody is reading it. :)

    As you know by now, all of my planning did not help much. But, I guess things may have been a lot worse had I not made some preparations.