Thoughts on limitations

Matt came home somewhat unexpectedly very early this morning (at like 4:30am)! This is great news for me, because I was really getting worn down trying to manage the daily household activities without him.  I have a really hard time just doing everyday things, like washing the dishes and cooking.  These simple activities exhaust me so much, and with having to go to the doctor nearly every damn day last week, I was quickly getting burnt out.  My new antibiotics have to infuse for 1.5-2 hours twice a day, which means during that time I'm attached to a flipping IV.  It's very frustrating for me, because it gets in the way of everything that I do.   For example, I was trying to load the dishwasher Sunday, and caught the IV tube on the corner of the oven door.  I ripped the foam tape that anchors the PICC line to my arm, but thankfully didn't pull the PICC out.  It didn't really hurt, but it frustrated me so much that I started crying, and then my dog was all like, "WHAT'S WRONG MOM?? BELLA FIX IT!!"

I'll admit the cuteness factor of the dog helped me pull myself together.

It's those little things - the limitations I face on activities I wouldn't give a second thought to prior to all this.  I bought kitty litter at Target, but had to have one of the employees put it in my car for me since I can't lift more than 10 lbs on my right arm, and I couldn't lift the 40 lb box with my left hand alone.  Then I got home and realized I had no way to get the litter out of the trunk of my car.

I had to ask a friend to help me empty my trash and to take me to buy Bella's dog food.

While I know my friends don't mind doing these things, I still find it intensely embarrassing to ask.  I mean, it's my house and my trash and my dog, why should someone else be doing these things for me? This is the part that I think most people without chronic illness find difficult to understand.  Healthy and able friends and family are happy to help, so why is it so embarrassing and hard to ask them for that assistance? I can't explain it myself, only that it sort of re-intensifies the illness.

Because you're sick, you can't take out your trash.

Because you're sick, you give a long and probably unnecessary explanation to the Target clerk about why you need help out to your car, because you know you look fine and you fear judgment.

Because you're sick, you wonder if people will ever get sick of you and your constant need for help.

Because you're sick, you feel a loss of independence and self-sufficiency.

Running into these limitations makes the illness somehow worse, because you remember what it was like to not have to think about how to get kitty litter out of your trunk.  I feel like this post turned out more depressing than I planned, but this is probably the absolute worst part of illness for me.  I can deal with the pain and the nausea and the exhaustion and the turning of my counter into a small pharmacy.  It's harder to deal with feeling like I can't do things I want to do, or that I can't accomplish the small errands needed in my household.  I've battled against limitations since I was diagnosed with Crohn's in 2004, and I still refuse to let disease dictate my life - but it's getting harder and harder to do that.  That's also where SuperBetter helps me the most.  I don't feel guilty asking you to play a game, and people volunteer for missions, so I don't feel like I'm asking too much.  Many times, you all also see better than I do what I need to get better.  It helps me push back against those frustrations.

I watched this TED talk the day before I had surgery.  I found this statement to be the most powerful: "We have to stop letting disease divorce us from our dreams." I wholeheartedly believe this; now it's time for me to stop letting disease cause me such distress over little things as well.

Battle with a vampire, progress report, and mechanics update

This morning I felt pretty good.  Rested, strong.  I let my guard slip for a moment, and paid the price - this afternoon a vamp came out of nowhere, tackling me into the dirt.  It was a ballsy SOB - it wasn't even dark yet.  I wonder if they are getting stronger, or finding ways to circumvent their weaknesses.  At any rate, the fight was pretty intense, and for a moment I thought I was a goner.  But then I remembered a new potion that Matt concocted, and it worked marvelously.  I finished off that Beast like he was nothing.

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Progress Report:
So this afternoon I got hit with pretty intense stomach cramps, dizziness, and nausea.  I'm almost certain it's due to a new medication that I'm on - the same symptoms hit me Wednesday night, when I started the medication, and have been coming and going ever since.  They are also listed on the bottle as side effects, so that's also a good clue. 

Matt suggested making me Wild Berry tea, as it contains both blackberry and raspberry, which help with stomach issues.  Then I thought to ask him to grate some fresh ginger in there.  Mixed with some agave nectar and milk, the result not only made me feel better but tasted really, really good.  So we can add that potion to our arsenal, yay!

It's been one week since we started this game, and I wanted to document the results on me as we go along.  It may be coincidence, but I have felt happier and more hopeful this last week than in a long time.  I've told my coworkers about this game, and they comment on how awesome the idea is, and I feel... energized talking about it.  When those stomach cramps hit today, I started to feel emotionally upset because I wanted to do some things to day, but then I looked at Matt and said, "Hey, these cramps are a battle with a vamp, how do I fight it?" And that's how he got to thinking about the tea, suggesting it as a "potion."  So far, it seems like it's working! I'm not so anxious and upset about the surgery I may have in two weeks, and reading all the posts here by my friends have definitely helped me, more than I can put into words. 

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Mechanics Update:

I have been reading Jane's book, Reality is Broken, and one of the things she identifies as part of a game is feedback.  I think it's really important for me to have that feedback mechanism to start seeing the things I do to fight the Evils as heroic, and not just because I "have" to.  This is kind of a hard thought for me to articulate, but just boil it down to say that I think feedback is really important for me.  So I want to assign points to achievements and missions that I complete, and then use those points to "buy" my rewards.  This is where I need your help though, gang.  I suck at rewarding myself fairly, so when I post an achievement or a mission completed, could someone chime in with how many points you think that's worth? And when we get the rewards up, could someone assign points levels to them?  For rewards, here's a list of things I've got so far:

-WoW sheet music for strings book (I CAN PLAY WOW MUSIC ON CELLO ARE YOU KIDDING?!)

-New cello bow

-New Macbook Pro

-Assassin's Creed

-Batman: Arkham Asylum (if my computer can run it, I'm still trying to figure that out)

-Dinner out at a favorite restaurant

-Going out to a movie

-Weekend away with Matt

-New sketchbook and pencils

-Hiking poles

-New perfume (this can be used multiple times because I love perfume)

-New wallet

-Massage

-New road bike

-Wii

-Kindle

-Gauged earrings

-Broken image necklace from Think Geek

-New tattoo

-Bottle of my favorite wine or a 6-pack of my favorite beer (can be used multiple times too)

And some achievements/missions I thought of:

-X points per hour of work

-X points for playing cello for 20 minutes (this is a power-up, but sometimes I'm so tired it's hard to play, even though I love it)

-X points for 30 minutes of working on my programming stuff

-X points per hour at doctor's appointments

-X points for posting to this blog

What do you guys think?