It truly breaks my heart to know that some members of my family think there's nothing wrong with me other than being lazy. "You just need to get out more"; "You need to exercise more"; "Well maybe if you didn't sleep all the time......" They just don't get it.
I wake up at 5:30 during the week. I leave for my 40 minute drive to work at 7:00. After 7.5 hours, I make the 40 minute drive back home. By that time I've been on the go for over 12 hours. Then I have to take care of my mother. She's unable to drive so I go by a couple nights a week to take her to the library; the grocery store; wherever else she needs to go. On Saturday, I take her to run her errands again. As her only child in the area, it falls on my shoulders. My adult children and my husband try to help out, but she always has complaints. "They're always in a hurry"; "I don't want to impose on them"; "They have too many other things to do." Then Sunday is church. And heaven forbid (no pun intended) if I miss church. My mother is convinced if I miss a Sunday I'm going to hell. Ugh!!
They just don't get it. My body needs at least 12 hours of sleep a day. Anything less is useless. More is often appreciated but rarely seen. Because of some of the medications I take coupled with the fact that I only have half a bladder, I'm often up 4 times a night to go to the bathroom. So no, I rarely see the needed 12 hours sleep a night my body needs.
But my family rarely understands when I do have a few free hours that I just don't have the energy to do anything. Do I WANT to go out and about and do things? Absolutely! A hike in the forest? Out to dinner and a movie? Visiting my daughter? I would love to do things like that. I just wish they understood how hard it is for me.
Sometimes they do. Some days they understand. But more often than not I see that look in their eyes. I hear that sigh in their voice. The exasperation. And I know what they're thinking........
"You could if you wanted to."
Not physically. Physically you're either sick and having a bad day or you're not. But emotionally. Perhaps it's just me. I don't know. I don't really know a lot of people who deal with long term chronic illnesses like I do.
Herein lies the problem. Over the past couple months my dr has made some changes in my medicine that have resulted in my feeling better. Physically. I'm still not where I would like to be. But I can certainly tell a difference from where I was at the beginning of the year. I'm in less pain; my thyroid is leveling out and I'm not feeling overly exhausted 24/7. I can tell a difference in my energy level.
But emotionally, I'm struggling. I've been so sick for so long.....I don't know how not to be sick. I don't know how to wake up, feeling great and go out an enjoy life. I wake up feeling great and I panic. What does this mean? What am I going to have to do? What are people going to expect from me? For so long so little has been required of me because of my health. So what happens when I'm feeling better?
It sounds so stupid, I know. I should be thrilled to wake up and feel strong and healthy. Instead it scares the hell out of me! On the one hand it's exciting to think "Wow, I can actually live life today!" I think about the things that I could do with my family. Go to the Farmers Market; go out to lunch; go to a movie. And then I panic.
The thought of leaving the comfort of my home; of my bedroom......it scares me to death! I'm safe here; everything is ok. If I go out in the real world what will happen?
I feel like a person with agoraphobia. I just want to stay in the safe confines of my room. Is it possible I'm afraid to get better? Am I afraid to live life? In my mind, there's so much I want to do. I want to go hiking with my family; I want to have cook outs; family game night. I want to go visit my daughter and son-in-law; I want to go visit my son at the barn. I want to go for walks in the evening with my husband.
But I am afraid. I know I need help to get beyond on this. I know I need to see someone. Because the bottom line is I can't, I refuse to go from being so sick physically for so long to finally feeling better only to be chained down by emotional fear.
So my first appointment with my dr is Wednesday and hopefully that will be the first step to living a fully functional, normal life.
I'm ready!
