Thursday, May 19, 2011

CFS Overload

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.


  1. When I first got sick about 15 years ago, the internet was still a relatively new thing. I looked up all kinds of information, read a lot of horror stories, found a lot of people who did nothing but complain about their symptoms, and came across one (1) website that had concrete, useful advice to offer (e.g., buy an adjustable clothes rack, so you can hang up your clean laundry on it while you're sitting down; use a toilet brush to scrub the bathtub instead of bending over; dress comfortably but nicely, so you feel good about yourself). She was cheerful, practical, and helpful. I took one long look at her website, blessed her enthusiastically, and never looked at another CFS site for years. She was the role model I wanted to find--I flat-out refused to be like the other people I was encountering.

    It's taken the XMRV possibility to make me return to the online CFS world. While it looks like some other, perhaps more viable, avenues are opening up for diagnosis and eventually treatment, I almost regret having reconnected w/ the CFS (or CFIDS, or ME) community.

    Generally, it's a self-selected group. The people with medium energy, like myself, or more, are not wasting it in petty warfare online. We prioritize b/c we must, and pay more attention to the healthy parts of our lives, lest we lose them.

    The ones who are extremely ill but positive have found quiet communities of like-minded people who offer one another *useful support*--not competitive descriptions of "whose symptoms are worse today" but real, valuable, "hang in there, I understand, never forget that you're a valuable person with gifts to offer the world" kinds of assistance.

    The others--all of them understandably frustrated--vent their frustrations at all the wrong sources. Most of them (as far as I can tell) were not pleasant people when they were healthy, and now they identify themselves primarily as PWC's--i.e., illness is, to the exclusion of all else, the most important (not just the most challenging) thing in their lives. At some level, they have identified as victims. Yes, managing this illness takes a huge amount of effort and control and seeps into every aspect of daily life, from food to showering to errands to holidays to relationships. But for most of the negative people I've encountered online, having CFS is central to their identities, not just a factor to be taken into account.

    All to say, don't even worry about pretending CFS away--*just focus on the things you care about more.* Since CFS has taken over so much of my physical life, I resent every minute of my awareness it gets. I acknowledge its existence in my blog, yes, b/c that's just plain honesty. But why on earth should I give it more room in my life than it's already taken?

    I admire your commitment to advocacy and education. But don't forget in the process that in practical, daily-life ways you *are still* a woman of skill, intellect, achievement, creativity, compassion, and family, not "just" a PWC. CFS does NOT take your deepest values away. It may take away certain capacities for expressing those values, but not the values themselves. You clearly value learning and the life of the mind--you can find ways to continue learning. You are close to your family--you can find ways to make relationships work. You are creative--pastels (or photographs, or caricatures, or poems) are well within your capacity to create.

    You may *have* CFS, but you are *not* CFS, unless you let that happen. You don't have to pretend that you're normal--you *are* normal, just a normal person who happens to have CFS, like other normal people have MS, or diabetes, or cancer.

    I think people forget that illness doesn't make them any more--or any less--special than they already were. Sorry--long sermon. But I've been thinking about this a lot lately myself!

  2. Thank you for the wonderful thoughtful comment. It is such a breath of fresh air compaired to what I've been exposed to this past month. I'm a relative newcomer to this whole thing. I've only been sick for a year and only had my diagnosises (sp?) for a few months. I haven't found a balance between activism and peaceful quite that I need for healing/caring for myself yet. The deadlines for the insurance applications haven't helped in this regard. I love your idea of finding the happy bits and pursuing those. I'm having to get creative with hobbies since many of them I used to do are either totally off limits or I can only do for a short time in small doses. I'm still thinking about this mess that CFS has made of my life and I don't want it to swallow me whole. I certainly don't want to get sucked into the darkside. I always assume people are basicall good but you're right there are some sour grapes out there and they were sour before they got sick. I'm so glad I found your blog. I love reading it. It always cheers me up.