This is my entry for this week's Artwords challenge : Eyes. I immediately thought of different points of view and how we can have the power to change how we feel by considering things differently. I had a profound experience of that just this week.
I was visiting the blog of one of my online friends, cusp. She, like me, has cfs and her blog has links to a number of others by people with it too. I spent a couple of hours submerged in a world which I usually try very hard to avoid - please don't take offense - a world filled with cfs sufferers. I know a lot of other people find a lot of companionship and solace in support groups of people with the same condition. I am an occupational therapist and in my previous life I have run them and encouraged others to join them. But they just did not suit me.
I guess I am really lucky (and this is going to sound really strange) that my husband also has cfs. It means I have on hand someone with an intimate understanding of the condition. We can share our experiences and our feelings but at the same time we know we have to make an effort for the other - so we can't let our despair (and there can be quite a lot of despair at times) get on top of us, because we know we will just drag the other one down. It's an extremely complicated dynamic, and for the first several years we did not get it right at all. In fact, we separated for a long period, but we overcame our difficulties, and now I cannot imagine living without my "DH".
The point I am trying to make is that other than DH, I don't really "hang out" with people with cfs. My friends are the friends I had before, albeit without a few who didn't believe, weren't able to adapt to my dropping out of things etc etc. So when I encounter a group of people with cfs - reality slams me in the face. And I realize that I sometimes live in a state of semi-denial about how different from "average" my life and horizons are.
I made my choice some time ago that I need to have what I call "real world goals", even if they are small and are always subject to review. By this I mean, goals that a person who was not sick might have, like exhibiting or attempting a course. This is not always easy and sometimes probably not wise, but without them, I just become depressed. And I know now that every 2-3 years there does seem to be a period when I will need to withdraw from anything that has a "real deadline" (as distinct from one I have arbitrarily set in my head) and just relax. This is how DH lives his life too - he is a musician - so we try to organise things so that when one of has a major deadline, the other is relatively uncommitted, and can be support-person. It seems to work reasonably well for us most of the time.
However, too often I compare myself with my friends who (if they are my age) are mid-career, well-established with families and lovely homes, going for trips overseas every couple of years, or else if they are art school friends, tend to be somewhat younger, but nevertheless are exhibiting multiple times a year, going on residencies and winning grants to fund all sorts of wonderful projects.
Reading the blogs of a number of others with cfs, some who seem to be more ill than me, and others who are less ill (at the moment) reminded me of the truth of my situation. And in fact I am so lucky compared to where I have been. There was a time when I was living alone with this illness. There was a time when I was much too sick to make any art work for months. There was even a time before I realized that art could be a sustaining passion in my life. So I am thankful to those others with cfs who blog and share their experiences and insights into this situation we are all facing. Thank you for opening my eyes and making me see things as they truly are.