I've been avoiding my own blog. Wish I could say it was the nasty relapse I've had due to The Diet From Hell (I seem to be finally recovering a bit. I'm no longer totally confined to the prone position.). Wish I could say it is because I am using all my brain power editing my affidavit for my LTD claim. While it is true that I'm recovering from a nasty crash and its true that I'm spending all my functional hours editing it is also true that I've been actively avoiding my own blog.
May is CFS awareness month. Being an activist by nature I joined in several actions. I wrote testimony for the CFSAC meeting. I 'liked' lots of CFS pages on FB. Friended lots of new people on FB that have found me via the CFS network on there. I watched most of the CFSAC meetings. I was posting CFS facts daily on FB.
To be brutally honest I'm CFSed out. I don't want to think about it any more. I'm trying to document the course of my illness in my affidavit. I'm seeing way too many angry CFS posts on FB. Yes, I actually hid some of the new 'friends'. I want to think about something else. I want to not have to write about it or read about it anymore for a little while. I don't want to read any more self help books for the sick. I want to sit out on my deck, enjoy some sunshine and read a trashy SF novel. I want to forget CFS for a bit. I want to make pretend I'm on vacation instead of sick. I don't want to read about it. I don't want to read others problems with it. I would love to read more posts from my well friends. I want to live vicariously through their stories and pictures. 90% of my FB newsfeed is now CFS related. After getting done going through my FB newsfeed the last thing I want to do is open up my own blog and read more posts about struggling with CFS.
In some ways I feel like I married into a dysfunctional family. Out of frustration and anger some CFSers are turning on other CFSers. I discovered a minor war being fought on line. I will NOT participate in the CFS vs ME war. It causes unnecessary hurt and strife for people who are already desperately ill. We need to work together to get biomarkers and tests and an illness definition that is accepted by the CDC so that we can be treated. We shouldn't be asking each other to join the proME antiCFS groups. I find it dismisses my own experience with my illness. There is also a war waging against CFIDS Association of America. This is another war I refuse to participate in. The information on their site helped me understand my own illness when I first got sick and had no idea what I was facing. I found the information honest and very very helpful. Some of the information on their site helped me put together a successful SSD application. I'm NOT going to bash this group. They may have some faults but they helped me tremendously when I needed it the most. More so than any other site on the web.
Yes CFS sucks. Yes we need to share information and support each other. I'm really happy that I've made some genuine friends via the internet that understand what I'm going through. But right now I want to pretend I'm normal. I want to forget about CFS for a few days. I know this sounds horrible. This goes against my core beliefs that I should be there for others like me. That I need to advocate for those that are sicker than myself but I'm scared. When I read so many stories from so many that are seriously ill from CFS for decades, I get scared that I won't recover. What I read in Dr. Bell's book is that I have a very good chance of beating this in roughly 4 years. What I read on FB scares me to death. People housebound or bedbound for decades. So I want to be selfish for a few days and not think about it. I want to pretend that this is temporary and that I'm getting better.