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Adjusting Expections

I think one important aspect of coping with ME/CFS is lowering our expectations, as sad as that is to do. But a discrepancy between expectations and reality is one of the biggest causes of unhappiness, even among healthy people. Everyone wants a Porche and a big house and gorgeous significant other etc and very rarely does it all come together. (And even when it does healthy people are still unhappy because those things can’t make them happy, happiness is a state of mind). But regardless, living with ME/CFS is a process of lowering the bar of expectations you once had for your life. You have to do it or you’ll go crazy. Since ME/CFS is often degenerative as it was for me, it becomes a process of continuing to let go of expectations and continuing to lower the bar until in my case it’s practically on the ground. There was a time when I said I would kill myself if I ever had to move in with my parents. And here I am alive after living with them for about 8 years now.

One way to do this is to try to be open minded to things you once thought were beneath you or simply not fitting of your personality or the way you wanted to live. I did a lot of this.

When I became housebound while living in Berkeley, CA I realized how difficult it was going to be to meet people stuck in my house so I signed up for a dating website - something that really doesn’t fit my way of life. But I decided I needed to be open minded to my options that were actually on the table to maximize my quality of life. Nothing much came of the dating website except one really awesome girl who made it all worthwhile. We had a good short relationship- a few months - before my illness got in the way and the relationship ran it’s course and we ended things on good terms. We talked about how the relationship couldn’t be long term because of my illness along the way so it came to a natural, mutual conclusion. I’d like to think we could be friends again someday.

I also really worked on overcoming shyness and asking girls out for coffee/tea (dinner is a bit much for me) who I didn’t know but met randomly in public. I met a girl this way too - an employee at the Whole Foods I went to for groceries. (One of my few outings - which exhausted me).

Being creative is hard wired to my existence and the worst parts of this illness have been when I’m too sick to be creative with anything in my life. As long as my health allowed I’ve always tried to find creative projects I could handle working on within my energy limits. One thing I did in Berkrley and while my health permitted here at my parents house, was collect vintage "planar magnetic" headphones from the 70’s-80’s (planar magnetic or "orthodynamic" is a different, superior technology than today’s headphones that no one at the time figured out how to implement correctly) (here’s a link for more information about the driver technology for those interested: ). And I’d work on figuring out how to implement the tech correctly to fix the acoustic problems and wind up with these amazing headphones for cheap. It was a creative outlet when I couldn’t be out photographing like I wanted to be. And I wound up really enjoying it actually. I’ve made headphones using this technology that measure head to head with today’s most expensive multi thousand dollar headphones with materials that only cost me 150$ or less. Sometimes 40$.

For the last 7 years I haven’t had the energy or freedom in my daily routine to be creative at all and it’s been crushing. I’ve felt adrift and empty. But I hung on for the ride and now I’ve had a completely unexpected upswing and I get to try to be creative with these social media pages and writing. Again it’s not what my healthy self would be doing but I have to change my expectations and adjust and be open minded and then I can find happiness in things I wouldn’t have before.

I even love my iPhone now which is something that would have made me throw up before. But it’s now my only connection to the world and only way of engaging with the world. When I get better hopefully it won’t remain attached to my hip but if I’m better it won’t matter I’ll be BETTER!!!


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