CFS (Chronic Fatigue Syndrome), but like I said in a previous blog, people don't get it. They don't understand it. They don't know how debilitating it can be. It causes things like insomnia. I have suffered insomnia for about three years now. Something I didn't know was connected with CFS. According to my FitBit, I never get more than four hours of restful sleep a night. Last night, I woke at 1:30 am and was up until 6 am. I did finally go back to sleep, but have no idea how this giant break in my sleep will affect my day.
Also, a follow up from last weeks blogs in which I walked to work...I've been paying for it. My entire body aches, I'm so exhausted, I've been having dizzy spells...I didn't walk to work yesterday, because I had some things I needed to bring there that would have been too burdensome to carry. This morning I needed to sleep as long as possible, so I won't be walking today either. I hope to get back to it tomorrow. I'm serious about fighting back. It may have put me out for a few days, but I'm going to get right back to it when I feel my body can handle it.
Luckily I have a job that is fun and doesn't take much physical effort. I can only handle 5 to 6 hours a day, especially when using my brain a lot. When I was trying to find a job, I was worried I wouldn't be able to find one that fit my needs. I was afraid I'd have to go on disability, which felt wrong because I'm perfectly capable of working, I just can't work a full time job. I even had to fight to get unemployment because I was only looking for part time jobs. I had to get a letter from my doctor and have a hearing with a judge. Thankfully she understood. I'm glad to have a job in which I only work 6 hours a day,
I worry though, because come April, I'll have to work 5 days a week. I know that sounds lazy, but the struggle is real. However, I did work 5 days a week before for 5 hours a day and I did okay. I usually had to take a nap as soon as I went home. This job is different because my hours are noon to 6. There is no nap time. If I had my choice, I'd get up early and get things done, then go to work. But the reality is, working those hours, I need to sleep as late as possible to help me make it through the day.
I know it probably sounds pathetic to a normal person, but I can't reiterate how real it is. I used to be a person always on the go, always getting things done. I had endless energy and could write, clean, cook, exercise, take care of the kids, do the grocery shopping, help with homework...how I'm lucky to get one of those things in during the day. So believe me, it's frustrating. I wanted a curable diagnosis so I could get back to being my normal self. But what my doctor said is this,
I'm still learning.