Monday, May 07, 2007

It's all in how you choose to view it (Artwords #52)

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.

Links to some of the cfs-related blogs I've visited so far

and there are more over on the blog of my chum, cusp


  1. What a sage and considered response to the discussions that have been going on elsewhere.

    I only really have contact with other PWME via the internet and even then it's people who happen to have ME but are doing other things --- where the condition is a part of their life but not their whole life.

    Like you, I don't really find comfort in support groups. Like you, I have run such groups ( for those that need or want them) when I was working but personally I find the notion of being in a room full of people just because we share an illness to be rather unsettling. I feel the same about the conventions that are held in America for children who have the same rare condition as my son, who is disabled.

    What I want and need is to get on with my life as well as I can but have people around who understand my limitations. That's why I find the cyber-relationships so useful. When I want to know about ME related issues specifically I go to a reference site or a site for an organisation that specificially deals with ME. The rest of the time I'm interested in creative projects ( cos that's my thing) and interested in those being nurtured by PWME because I want to see if I can glean any tips.

    I love your phrase 'real world goals' and I shall adopt it if that's OK with you.

    Take care


  2. Thanks for your kind comments about my blog, cusp.I agree that it is incredibly inspiring to see what other PWME/CFS are doing and how they manage their lives given the particular challenges we face -cyber-friends are perfect for this.The past two weeks I have been wondering whether I should just give up on attempting to finish this MFA. Having read some of the blogs you link to has helped me to decide to continue. I just have to keep in mind that this is just something I am attempting and that the world won't end if I fail. Oh! and
    I'd be "chuffed" if you adopted my phrase "real world goals". Warmly.

  3. I found your blog through another ME blog and thought I would just say hello and how much I enjoyed this post. Well said.

    I've had ME/CFS for 7 years. My knitting keeps me centred and in the creative loop. Sometimes all I can do is work a few stitches but holding the yarn and needles in my hands keeps me in touch with my creative spirit.

    I love the piece of art you shared in this post. May I ask, is it watercolour or other medium?
    mary anne

  4. Powerful words said with strength and purpose. I've been mulling over this post for a few days, finding multiple similarities in what you've said about CFS with a bout of mild depression I'm emerging from. While I don't presume to know anything about CFS other than what you have written, your creativity and persistence is and can be an inspiration to anyone who may be feeling the loss of The Muse. Thank you.