Intention of this post is a quick update of how I am doing. Good news is that I haven’t been in zombie status.
It’s hard to explain, though.
Funny part is that I’m feeling busy at the moment, although I hardly do anything special. It is probably because I am constantly wanting to squeeze in essential activities between serious and long rests; such as preparing food, cleaning up dishes, cleaning the house, tidying up the yard, doing little bit of potting around, washing dogs, doing laundry, writing cards to distanced friends, doing proper grocery shopping, cleaning up old business papers, organising to see an optometrist, organising to see a dentist (maybe), driving my car on the motor way to make sure battery is properly charged, managing to sit in the sun for 10 minutes a day, using my camera, writing haiku, having coffee with neighbour friends, preparing for Christmas, and etc.
Amazingly, I have completed a few list of things to do, such as had a haircut finally, organised a person to certify my ID to request MRI image from the hospital, and etc…
I’m eating more frequently and reasonably since I was a zombie whenever I have enough food in fridge and pantry. I even have shower everyday at the moment, and it feels very nice and I’m in control. With these increased activities, rests in between became more serious business, and taking up much more of my very limited time. Sadly, my interaction with friends by email has dramatically reduced. 
My fatigue level is quite high. It is because my activity level is more, although it is still much less than I wish to do. And also it is because the weather is getting warmer. It is nice that I am out from bed more often, although I am this nagging feeling that I am overdoing and I would crash if I don’t slow down. I am feeling the level of fatigue is slowly accumulating. How ridiculous it is that I have to slow down when my life is already extremely slow.
I had about two weeks of sleeping during the night. Now the sleep has shifted forward again and I’m sleeping during the morning. I guess being awake during the day time also encouraged me to spend more time outside of bed. While I’m sleeping during the day, I continue staying in the bed during the night and type emails and blog posts. These activities take less energy reserve because I’m lying in bed and I only use my fingers and my mind to type on the laptop. So I should be less fatigued, I guess.
I don’t know if it is better for my quality of life to keep physical (reasonable physical for severe MEite). When I spent less time on laptop, I don’t interact with anybody or anything. It made me feel lonely…
We just had severe storm week. My laptop and internet modem cables had to be pulled out from the wall. It made me feel absolutely (little scary kind of) isolated… I felt something was wrong with my life. I’m depending too much on friends in my laptop…
I’m keeping up with my daily push away exercise. However I had to cut it back from 8 to 7 last week because of increased fatigue level. This is not because the exercising is making me sick, but because the increased daily activity is using up my limited energy reserve. I just cannot seem to find the right balance.
I’m also keeping up with twice a week medical appointments. My doctor friend is still wonderful. Some of the comment he made about ME had me wonder if I am underestimating his knowledge about ME. (One of my friends suggested that he is becoming a ME Specialist regardless of his intention.) I consciously stop thinking about it. The important thing is that he is keeping his eyes on my overall health condition and he is doing a very good job.
My definite plan at the moment is to stay in bed for the day when I wake up from the next sleep.
Intention of this post is a quick update of how I am doing. Good news is that I haven’t been in zombie status.
It’s hard to explain, though.
Funny part is that I’m feeling busy at the moment, although I hardly do anything special. It is probably because I am constantly wanting to squeeze in essential activities between serious and long rests; such as preparing food, cleaning up dishes, cleaning the house, tidying up the yard, doing little bit of potting around, washing dogs, doing laundry, writing cards to distanced friends, doing proper grocery shopping, cleaning up old business papers, organising to see an optometrist, organising to see a dentist (maybe), driving my car on the motor way to make sure battery is properly charged, managing to sit in the sun for 10 minutes a day, using my camera, writing haiku, having coffee with neighbour friends, preparing for Christmas, and etc.
Amazingly, I have completed a few list of things to do, such as had a haircut finally, organised a person to certify my ID to request MRI image from the hospital, and etc…
I’m eating more frequently and reasonably since I was a zombie whenever I have enough food in fridge and pantry. I even have shower everyday at the moment, and it feels very nice and I’m in control. With these increased activities, rests in between became more serious business, and taking up much more of my very limited time. Sadly, my interaction with friends by email has dramatically reduced.
My fatigue level is quite high. It is because my activity level is more, although it is still much less than I wish to do. And also it is because the weather is getting warmer. It is nice that I am out from bed more often, although I am this nagging feeling that I am overdoing and I would crash if I don’t slow down. I am feeling the level of fatigue is slowly accumulating. How ridiculous it is that I have to slow down when my life is already extremely slow.
I had about two weeks of sleeping during the night. Now the sleep has shifted forward again and I’m sleeping during the morning. I guess being awake during the day time also encouraged me to spend more time outside of bed. While I’m sleeping during the day, I continue staying in the bed during the night and type emails and blog posts. These activities take less energy reserve because I’m lying in bed and I only use my fingers and my mind to type on the laptop. So I should be less fatigued, I guess.
I don’t know if it is better for my quality of life to keep physical (reasonable physical for severe MEite). When I spent less time on laptop, I don’t interact with anybody or anything. It made me feel lonely…
We just had severe storm week. My laptop and internet modem cables had to be pulled out from the wall. It made me feel absolutely (little scary kind of) isolated… I felt something was wrong with my life. I’m depending too much on friends in my laptop…
I’m keeping up with my daily push away exercise. However I had to cut it back from 8 to 7 last week because of increased fatigue level. This is not because the exercising is making me sick, but because the increased daily activity is using up my limited energy reserve. I just cannot seem to find the right balance.
I’m also keeping up with twice a week medical appointments. My doctor friend is still wonderful. Some of the comment he made about ME had me wonder if I am underestimating his knowledge about ME. (One of my friends suggested that he is becoming a ME Specialist regardless of his intention.) I consciously stop thinking about it. The important thing is that he is keeping his eyes on my overall health condition and he is doing a very good job.
My definite plan at the moment is to stay in bed for the day when I wake up from the next sleep.