Tuesday, August 13, 2013

Odds and Ends

There's always that point in a move where there is a bunch of random stuff that gets put in a box for lack of a better place to put it. 


As I head into this transition I find myself in that same space except rather than "things" its information. I'm trying to find a way to cope with a difficult reality (one I'll talk about in a future post). 


First, I discovered why I was flattened so badly the past few days. I was exposed to a toxin in addition to pushing myself. It it was purely viral then why did taking a shower help me feel a little better?  

My housemate invited me to a play on Sunday. I was so happy. When one has been isolated for over 6 years it's a big deal to be invited anywhere or included or treated like you matter.  

As I was standing in the vegetable aisle picking out some Kale I looked up as two woman greeted each other, hugged, and started talking about their lives. My eyes filled up with tears as I felt the longing that emerged. It's been years since I've had that happen. Sometimes its overwhelming how much I miss having friends like that.  

After being isolated so long its like I've forgotten what having friends feels like or how to go about making friends or how to accurately judge social cues. I seem to be misreading them. 

There is a new book out that was written by someone who suffers from this illness (who has mostly recovered by doing "extreme mold avoidance"). I'm always in support of sharing information when  someone finds a way out from this prison. 

Lisa has chronicled the life of someone who has all but recovered using a strategy he learned in the army. 

I wanted to include a link in case anyone else is interested:

http://www.amazon.com/Back-Edge-Discovery-Desperately-ebook/dp/B00EDGEHT2/ref=sr_1_1?ie=UTF8&qid=1376423100&sr=8-1&keywords=lisa+petrison

In case the link doesn't work you can go to amazon and look up Lisa Petrison, Ph.D. "Back from the Edge...". 

I know there is a lot of controversy about mold avoidance but the reality is that people have dramatic improvements when they follow the guidelines.  

I know that the people who have embarked on this journey have had to go "in the closet" so to speak because of the judgment that has come their way. They become as marginalized by the CFS community as CFS patients do by healthy people. 

If I had the money to sustain a living like that I would try it. I have noticed a big bump in improvement if I'm in the right type of living situation. And I go downhill if I'm in an environment filled with various toxins. I'm still learning what affects me.

I'm feeling better than I have the past couple days but am still feeling rotten. I'm going to air out the house and do a bit of mopping and stuff.



3 comments:

Lee Lee said...

I think you are right about mold avoidance, for some people it can make a huge difference ... but its hard to sustain so much cleaning etc.

Awesome that you were invited out somewhere even if you couldnt go. I too have forgotten what its like just to be invited to something. I hope next time you are in a position to go along :)
Oh and regarding facebook, I put a message up saying that I needed to delete some people because I was to ill to maintain a large number of friends and that anyone who wanted to stay should leave a comment. I waited a few days and then just deleted a heap of people who didnt respond. It was a good move!

Hang in there my friend, who knows whats around the corner. xo

me/cfs warrior said...

t was awesome to be invited somewhere. I get worried that because I decline it won't be offered again. It becomes hard to trust positive things because so much other stuff has happened.

I remember now when you put up that post on Facebook. That was a nice way you handled it. I think I'll give that a try in the next couple days.

Thanks Lee Lee, my friend...xoxo

Anonymous said...

Thanks for mentioning mold avoidance. Hopefully we will figure it out better so that it is easier to do.

The first people doing it had no other experience to go by and had to figure it out in an extreme way, but there might be measures that make it go faster, and people figure out tricks as time goes on.

Look for more info on this in the coming months and years. Hopefully it will become something that many people can do, whether at an extreme or moderate level, without undue cost or alienation from society for very long.