Thanks for the lovely comment. You must know a whole lot about CFS and chronic illness from being a care giver and a pillar of support for the last 18 years. It must be very difficult to watch someone you love struggle with illness. And then get better, and then struggle some more.

I am very lucky that I am able to work full time plus some. I wish I had an answer on how I did it….just a bunch of things all came together. I do know that I have been having a hard time for the last 2 months, and took some time off~ and it made me crazy, because staying at home resting isnt helping the situation, so I may as well go to work.

Sounds like your views on “positive thinking” and being rather than thinking, line up perfectly with mine. Have you read Gallwey’s Inner Game books? I am a super big fan of his, and while I haven’t come across any of his writings where he addresses living with chronic illness….he does talk about aspects of life (through his topic of choice) that can help all of us.

His, Inner Game of Tennis book, is a very big help in my classical guitar teaching practice…and also with just living my life. You may find his works really interesting.

I am glad you are enjoying this blog. Keep in touch!

How wonderful that you are able to work even though you have CFIDS. I am so sorry that people try to judge you and your experiences with this horrible illness. My spouse has been disabled with CFIDS for the last 8 years, and has been ill for 18 years. Your blog is really cool, and it’s nice that you use some of your energy to help other people understand the hell that is CFIDS.

I think our society in general has been deluded by the so-called “positive thinking” and “laws of attraction” fad. While I don’t doubt that it’s better to be positive than negative, I totally reject the idea that people who are sick are ill because “they wanted to be on some subconscious level” or “they attracted this” or that they stay ill because of some problem with THEMSELVES . . . like bacteria and viruses don’t matter? Please. If wanting to be well were enough, NO ONE would have this illness.

Some people just don’t realize that no one . . . and I do mean NO ONE . . .WANTS to be sick!! Hellloooooo!!!!!!

Wow. Thanks for letting me vent that.

Just “being” is a wonderful thing to do, and it’s harder than one might think. In the CFIDS journey that we have been on, I am grateful that we are UNABLE to fall into the modern trap of trying to fill every minute with “something.” Sometimes, just “being” is all one can do . . . and that in and of itself, is quite enough.

Best wishes,

Donna Mirabile

Hi NTE (and welcome!)

sometimes reading these comments are a little bittersweet. On the one hand, someone who is reading my blog understands the issues I am having (yay!). On the other hand, someone who reads my blog is having the same (or similar) issues that I am having (not yay).

The really great thing about writing cfs squared, is the support that comes along with it. Some really great people read and comment on this blog…and we are becoming great friends.

So, welcome to the group

“I know that I am doing everything possible to get well. Should I be caring if they believe me? It would be nice, if they could get past their own ego’s and realize that my illness or wellness situation… is about me and not them.”

This is a constant battle for me. A recent incident with my SIL, and then a tough discussion with my sister, have left me still shaken: I thought they were getting it, that they knew but it’s obvious that they don’t. 13 years into this, and they still have their doubts.

So frustrating.

I agree!

Which is why the answer was “leave them”.

support comes in many forms….and it just so happens that this form (by which i mean the lack of support) wasn’t working for me.

This begs the question: is such a system really a SUPPORT system?