This is affirming (I don't think that's the right word, but I've been battling brain fog for 3 weeks now): http://www.psychologytoday.com/blog/turning-straw-gold/201105/the-stigma-chronic-fatigue-syndrome-ii-readers-respond
The experiences with the doctors remind me of the experiences I have with people. This week (last week?), I barely made it through my work days. I came home and went to bed by 6pm. I slept until the phone rang or American Idol came on. I showered. I went back to bed. Wednesday, I reached a low in spirit; Thursday, I got a break and started to feel better. Friday, I was still on the up swing so I stayed up until 11pm or so cleaning in hopes of getting to Memphis before Sunday to appease my girl. Saturday, I paid for it. My body reminded me that I am not healthy and I am not in control. I had somewhere to be by 10:30am Sat so I drug myself out of bed around 9. I made my two errands, I went back to bed. I slept for 2.5 hours, again woken by the phone, then I went to the laundromat. That 90 minutes of activity wiped me out but because of the late hour, I decided to stay up until 8 and then sleep for the rest of the day. My evening consisted of things I could do while sitting, as I didn't have the energy to much more. This morning, I slept longer than able if I planned to go to church. I wanted to go visit a church; I didn't go visit a church. And here I am sleepy post breakfast, needing to get ready to hop on the road. I'm starting to fear I-40 more and more as it really isn't safe to let me drive like this.
Explaining this experience to the normals doesn't go so well. They tell me they get tired too. Like this? Where you are too tired to eat and sleep for 12+ hours each day? Where you can't remember anything especially once you "wake up" from the cloud and realize you have no idea what's happened the previous 5 days? Do the normals struggle with the shame of calling in sick and then explaining that the sickness is fatigue? Do the normals stay at work knowing they are "sick as a dog" but refusing to look like less by going home? I can't imagine their experience being like mine but since I can't remember being normal, what do I know? All I know is that I am viewed as weak for giving in to the fatigue. I know that people like to tell me to exercise and I'll get over the fatigue. Really? I can't stand and clean my kitchen for 10 minutes but you want me to start an exercise program? Nevermind that I exercised 3 times the week before this fatigue period took control. I just need to push through, exercise some more. The lady in the article is right. People tend to view us as just lazy. People assume that I never exercise and that's why exercise will make me well. I exercise more than most of the ppl that say that shyt but look, it hasn't helped.
And then there's the relationship piece. Where are the posts and articles about how chronic fatigue and chronic pain f_ck up one's love life? Tammy has been so great to me concerning the pain but I don't know if she can understand the fatigue. Sometimes, I seem to just sleep all the time. Now, I disappoint because I didn't push through the things I need to do and hop on the road sooner than I planned. She hung up on me last night. Disappointment. Shame. I wish I was stronger. I think my strength made me sick. Life is showing me that I don't control shit. Here I am, less than 90 minutes up from a 12 hour sleep, ready to crawl into bed again. Good luck to you on seizing the day.
EDIT: Tammy didn't literally hang up on me (i.e., in the way typically thought of as hanging up). I called her. She didn't like what she heard. She said, "okay. I'm gonna let you get back to what you were doing". Click. The conversation lasted less than 10 minutes and I called her. Why would I need to get back to what I was doing? Hence, my "hung up" expression.
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