I was reading a book a while back about living with chronic illness by Patricia Fennel. The author was encouraging people with chronic illness and limited energy to make sure to divide their usable time between work, social, and personal enrichment activities. Even if there's only a few minutes a day here and there, to make sure these areas are all being fulfilled.
While a good idea, I don't necessarily think that all healthy people even do this. I know plenty of workaholics. And especially when I was first ill, I felt immensely guilty doing anything "fun" when I wasn't able to even carry out a portion of my work responsibilities.
Lately, I've been so ill I haven't managed social, personal, or work. I have a paper I need to edit that is hanging over me. During this relapse, I've opened the document to work on it six days in a row without accomplishing anything. Similarly, my roommates' parents were visiting so I took the small office and gave them my room (bigger, nicer with a queen bed). I pretty much lay on my futon on the floor of the office the whole time, only getting up for dinner and a shower or bath every few days. It was so embarrassing. But I was way too sick for anything social.
Personal fulfillment wise, I was able to read some fiction while laying around the past two weeks. Until last night, I hadn't been on a single out-of-the house outing in 11 days (except to sit in the back yard twice or walk to the alley and back).
My point being, that when you're really sick, it's hard to attend to any of these categories.
Finally, yesterday morning I had a little two hour window where I didn't feel like death and was surprised to find myself working on that paper. It made me realize how restricted I've been by this relapse.
If I continue to improve, the hard part will be holding myself back. I have errands I need to do and am just crazy of being cooped up in my room.
Upnorth~ I am so sorry this continues for you. You are in such a long and severe relapse. It must have been hard to not be in your comfy room and have company around too..that gets to us on a good day! I hope that you do improve more and more each day and you are able to hold yourself back as you say. That is the hard part isn't it.
ReplyDeleteIt has been a tough one Renee, thanks for checking in...it really helps. I did try an outing today (nothing strenous). Just drove to the bank for 5 min (its two blocks away). I had major dizziness and waves of the flu and knew right away I'm not ready for outings quite yet...at least I started small and didn't try to camp, right?? I have faith, though that I will improve eventualy...mostly because I always have.
ReplyDeleteHiya. I guess I've read your blog from the viewpoint of a parent (because it is my 12 year old daughter who is afflicted by CFIDS www.parentingcfs.com). I just wanted to point out that you write that you were embarrassed that you were not well enough to get up much when your room mate's parents were visiting and that makes me want to reassure you that you have nothing to be embarrassed about. You are ill and you don't need to apologise for that. I think it is so difficult for all you PWCs who lived such busy lives before to not self blame however hard you try not to. Hope you understand what I mean and keep going easy on yourself. It's the only way you are going to get better (unless that elusive cure comes through -let's hope : )). Anyhow you know this better than me after 7 years but I just wanted to say hang in there and good luck!
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