Tuesday, April 19, 2011

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.



    So, so cute!!

    Thank you so much for posting, Jess. In our zeal to help, maybe we do sometimes forget that it's not always easy to ask for the help, or comfortable to be the center of the attention. Thank you for being honest.

    And YAY for Matt coming home!!!

  2. Because you're awesome, we want to help you!