Thursday, January 26, 2012

Optimism or avoidance?

I try to be optimistic most of the time, and it can't always be helped not to be. But I feel like I've gotten a little better over the last couple of years about being less sad about how things are playing out. I was looking through my old posts while getting re-acquainted with my blog after almost a year and a half of neglect and it's interesting to see how much I've changed even in just this year and a half. I found a post I never published. I think I was trying to find an appropriate analogy for the grief I was feeling at the time and I kept it private because it was just too much, too personal, to share with the world. And now...well, while I'm still greatly saddened by the course life has taken, I think I've come to terms with it a little more, enough to have a (dark) laugh at the slightly melodramatic nature of what I wrote.

In this post, I think I was trying to describe how my sadness and "me" are very separate. I mean, it's always there, and if I acknowledge it at all it will consume me. But for the most part, I tuck it away and keep my distance (until I can't anymore). It has this strange quality to it; it doesn't feel like it's integrated into who I am. It just rides alongside whatever I'm doing, and I know it's there but I just try to ignore it best I can. Like a creepy stalker that won't go away and although you put a restraining order out against him you can still see him lurking around 300 feet away, always following you. Anyway, my roommate, a social worker, tells me that's not healthy and I should deal with my feelings, but what does she know ;)

So I guess the question is: is that truly optimism? Or just pure, unadulterated, blissful avoidance? I don't know. But it sure makes things easier.

Wednesday, January 25, 2012

Health Website

Quick note: I was introduced to this website called "Patients Like Me" which I'm finding pretty cool. Things you can do on there:

  • Sign up and fill in your information about your illness, what treatments you're doing (how much, for how long, evaluate them, etc), your symptoms, etc
  • You can search for other people (1000+ with CFS on there) who are more similar to you in their experience (similar age, length of illness, location even). 
  • You can fill out occasional "progress reports" on your pain/fatigue and also a short quality of life questionnaire.
  • You can track your progress based on the questionnaires (charts and graphs and things, yay!) over the last week, month, year
  • Look up top treatments posted by people with CFS (and other conditions as applicable) and see their evaluations of them
  • Print out a log of all your symptoms, filled out questionnaires, etc to take to your doctor's visits.
The website is a little cluttered and can be a bit overwhelming, but they take you through what you need to do step by step mostly. And by the way, I am in no way affiliated with this site (even though I realize I sound like a walking advertisement!) I just thought it was nifty. You can look me up (if you're a member), I'm all signed up myself. If I find anything of interest on there, I will post, but for now I just spent the last couple days filling everything out :) 

I'm also getting a cold, ugh. Hate being sick on top of being sick! I don't even understand how that works in the first place...

Monday, January 23, 2012

Hello and Happy 2012!

I've been away from here for quite a bit. I suddenly stopped having the urge to post, and even more generally read about CFS-related things. I think doing those things pulls me out of the present, the day-to-day, and forces me to put things into context of the big picture, which I really hate to do. It just makes me sad about life and I really hate to be sad. But, I figure I'll give another go of it. This time a little less obnoxiously go-gettery and optimistic ;)

Anyway, I hope everyone's doing as well as possible, and at the very least well in spirit! Updates on my part? Not much has changed; still plugging along. One year later and still no weights for me (laughing at myself and my naive thinking of doing weights a year ago, as mentioned in my last post: ha ha ha!) BUT, I do now work 5 hours a day, instead of 4 (though the boss-man very much wishes for more and more and more). And after so many many false starts and failed attempts at a consistent "yoga" regime (aka stretching for me!) over the last 4 years, I've been able to keep up doing 30 minutes of light stretching twice a week for 3 months now (with an occasional week off here and there, depending on how difficult the week has been).  I've also started to try to do grocery shopping for myself, instead of having my parents bring me food for the week on the weekends. I try for every other weekend, but there have been some time with multiple weeks in a row! My grocery shopping takes all of 15 minutes, and I couldn't do more, but it's a step forward. Cleaning my apartment and doing my own laundry are still not for me; my ever so wonderful parents do that for me as well. But it's a goal!

Anyway, maybe I'll post in the future about some of the things I've learned and incorporated into my way of life to make things easier for me; maybe they can help someone else and maybe someone can offer me some tips about the things I do ;) Signing off until next time and sending out lots of CFS-y love to anyone reading this :)