After something I wrote to one of my friends today I stopped and thought: I wonder if my friends think I'm crazy for getting excited over the little things I can do. Crazy or do they just feel pity towards me. Instead of feeling these things I wish I could tell them to look at their lives and be grateful. Thank God for all they can do without having to think about it. Without having to cry over not being able to do something or feel successful for doing it.
Every day I wonder if I'll be able to lift myself out of the bed to go to the bathroom. I feel successful being able to go to the bathroom without help
I have to wait for someone to be home for me to take showers because if my pain is too severe or comes on all of a sudden I get weak in the knees and fall. I can no longer risk a fall with an infant waiting on me to take care of her. There are many of times I've had to take a shower sitting down (however if I'm in this pain I'll then need someone to help me get back up again). I feel successful when I can take a shower without help.
When I'm having a good day I can walk down my driveway to get the mail. Such a simple thing that puts a smile on my face because I was able to do it on my own! I feel successful when I can get my mail.
I worry every day that I won't be able to make it up the stairs to walk my dog. I do - every day no matter what, even if I have to crawl up the stairs because she needs to go to the bathroom. I can't just make her wait. My dog knows what 'wait a little bit I'm in to much pain means'.When I'm in pain and tell her she'll come crawl up next to me and go back to sleep for as long as she can. This makes me cry thinking about it, she shouldn't know what that means. I feel successful when I can walk my dog.
I love to cook but often have to have my grandmother take the food out of the oven because all the standing I did preparing the food hurt me so much that I have to lay down. I feel successful when I finish a meal I started.
I feel successful when I can walk through a grocery store instead of being in a wheelchair, when I can walk around the mall, when I can sit through a whole class, sit up for a whole movie, when I clean, when I can do two things in one day (ex: shop and cook, movie and dinner).
I know before I had all this pain I took all these things for granted. As a teenager I walked everywhere, now I can't walk a quarter of a mile without being in pain and a half of a mile without crying. A few years ago I would have been able to help any of my friends move, now I have friends moving tomorrow and I can't help. They understand of course but I want to help. I want so badly to help. I hate that I'm crying because I can't. I hate that it gets to me so much. I know it's not a big deal and that they have help but I. want. to. I want to be able to. I hate this disease.
I try not to let things get to me but eventually it builds up. I couldn't fold the laundry last night, I couldn't cook dinner last night, I couldn't get out of bed this morning to take a car so I had to reschedule an appointment, I couldn't go to my friends house to hang out today because I didn't have the car. It adds up and sometimes it's hard to ignore. Sometimes it's hard to say 'it'll be okay.' I know it will be. Right now it's just hard to see that.