Wednesday, 21 April 2010


It's a tough thing, this handing over control. A friend ventured to tell me that she thought I was "a bit of a control freak".....! I immediately looked stern and replied "NO I'M NOT! I'm a LOT of a control freak!"

I began thinking that in our world there are lots of things that are beyond our control due to our condition. Most of these things are trivial ones, the gardening, the housework, the state of the fridge etc!

But then, there are the bigger things, the personal and important battles. The ones that take their toll on our resilience and character.

The plans that have to change, suddenly NEEDING to rest just before you should be somewhere, shaking so much that any further involvement in the day (however cool it might have been) is over. Those endless days when you are so sick that plans themselves are too much to think about.

Today, my changed plan is a trivial one - I'd promised myself an afternoon sleep/rest in our yurt in the garden. I got home, walked down to the yurt to open it, and went back to the house to get something (with what proved to be my last dribble of energy!)

Back in the house my head span, the tiredness ached in my middle like I was made of lead, and I was not at all sure my legs would get me back out there without giving up altogether!

So, for the zillionth time, my plans changed...! I've spent the last 2hours sleeping and resting here, in bed, easier to reach than the yurt! Not nearly so much fun, or so cool i can assure you. Something to do with the dusty surfaces and piles of laundry (clean and otherwise)!

I think I hang onto the things I can control, maybe it's desperation to have predictability, normality, some kind of feeling of self-worth, i dunno. Gettin myself in too deep for my present level of cognition to handle...! Elephants came and stole my brain while I slept! (Hey, now there's a blog title if ever I saw one! Or, perhaps a horror movie!!!!)

Re-reading this I find that it will seem EXTREMELY trivial to all but me. I guard my me-time ferociously as it is so important to me, and equally important that it's the right kind! And this feels important enough to blog, but in the scheme of things, I'm probably just being grumpy!


  1. Even though you're feeling exhausted and grumpy and think that your thoughts are trivial, you've actually expressed some pretty important things that many of us can relate to...I sure can.

    Just this sentence is a little gem, you wrote: "I think I hang onto the things I can control, maybe it's desperation to have predictability, normality, some kind of feeling of self-worth, i dunno."

    I so relate to this statement. I feel the need to hold on to as much normalcy (normality?) as I can, since my life with chronic illness often leaves me feeling like a kite without a tail...just kind of a floating through my days...without any sort of tangible marker, accomplishments, or creative expression. Is it it Tuesday? Does it matter?

    It makes sense that we would want a sense that we have some sort of control. I also crave having a sense of accomplishment which now has to come from things that most people would sniff at. Small victories are the order of the day over here.

    Your yurt also offers something that many/most (all?) of us need...something that soothes/delights our souls that we can look forward to.

    I've been making digital collages on Polyvore for the last few months. Just playing around a half hour a day...or an hour or two on good days, I've had so much fun and have regained a sense that I'm using my creativity. That's another need that I have...not just a want...a need. Re-arranging my pillows and refilling my pill boxes just doesn't cut it! Here's the Polyvore web address if anyone is interested (or feeling well enough) Best of all, no set up and no clean up with digital art!

    Now I'm going back to bed. Have a great rest of the day, you guys.

    hugs from California

  2. Hi Zarla, Sorry you didn't make it to your yurt today. It's an awful feeling when that last drip of energy gets used up before you get where you need too.

    I notice that often the sicker I am the more of a control freak I become...I think because I can do so much less...I see all that needs to done that I can't do and start asking people around me to do it as if they are my hands and feet.

    Me time--time with those you love--time to do what you love most all become so much more precious when you lose your health and have a trickle of energy to expend. Grumpy's okay...grumpy's real.

    Here's to tomorrow and being able to make it to the yurt before your energy runs out.

    Love, from one control freak to another, Kerry

  3. Kate,
    Thankyou California, for the hugs!

    Thankyou Kate for your wonderfully affirming post! I will be honest, I was feeling tired, frazzled and more than a little disappointed with myself for not making it back down to my yurt. Hence my post title!

    I absolutely love your 'Kite without a tail' analogy (now there's another blog title!) You do have some nice analogies Kate, I love analogies-something everyone can relate to, brilliant!

    It can feel like we exist in isolation to the rest of the world when we are bedbound or housebound. Something which helps us put a stamp on the day, to say 'I am here' is vitally important.

    Great idea to post the link to your 'Creative Haven'. I'll try to put the link on my homepage somewhere as soon as possible. Thanks for that-may even check it out myself!
    Yes Kate, there's a limit to how creative you can be with a pill-box!

    I love to be creative, but my creativity is directly linked to my energy/wellness so if it's a bad time, I'm not motivated to create. But when I am OK, I enjoy ragrug making, beading, jewellery making/repairing and recycling bottles into drinking glasses/vases etc.

    Stay as well as possinle,
    Hugs from Leicestershire right back at ya!


  4. I have to say, after reading your post Kate, I'm not in the slightest bit grumpy. You have cheered up this tired blogger!
    You are a special person, thankyou!


  5. Kerry,
    Hi, got your comment last night, but know you wouldn't mind me 'sleeping on it' before i replied.

    I have had hubby get my small hammock out, and put up, between two apple trees. It's about halfway between the house and yurt!

    Now I just need to make it there, and rest up before venturing the rest of the way. Yay hammocks! Yay husbands!

    Seriously though, you never said a truer word 'chuck'! When we spend so much time having to rest, be alone, checking out of the family time etc, of course the time we CAN be involved is so precious.

    We just become 'Time Experts', thinking ahead and planning how much we can fit into the shorter time allowed, and still function.

    The amazing comments from both of you have lifted me, made me think, and put me down again, no longer giving myself a hard time....

    I love a good meaningful conversation before breakfast-sets me up for the day!

    I hope everyone has as wonderful a day as possible. Hugs and stuff from here in chilly, but very sunny Leicestershire!

    thankyou guys


  6. Just thinking of you in your little hammack and me in the "huge" one. (chuckle, chuckle). I think I have to watch what photos I post.

    Teasing you is always fun Zarla. Yes, it sounds wonderful to rest in a big ole hammock with my grandbaby--and if its big she won't fall off.

    Just wanted to stop by, know its bedtime over there. Hope you get lots of comfortable sleep tonight. Love and zzzzzzzz to ya BFF.

  7. Zarla,

    It's taken me a few days to get back to you...and here are all these great comments from you and Kerry! Having people who understand does lighten the burden somewhat..and I'm glad to have helped improve your outlook.

    Until I found Kerry's blog and now yours, I had one other friend with ME/CFS and I just know her through Facebook! My husband is wonderful, but knowing a few other souls who walk a similar daily path like I do is bringing me a new sense of support. Who else instantly relates to...multitudes of pillows and what brain fog feels like and how drop dead fatigue can hit you like a ton of bricks necessitating an immediate nap... and all the rest of it?

    It has made a world of difference to me support-wise to have found you two. I am looking forward to getting to know you better as well as the other ladies who comment and support.

    I already know that I love your sense of humor!

    Today I am going to do an internet search to learn a bit about yurts. I'm intrigued. I should know about them...I'm a Californian for goodness sakes. (Kind of a stereotype there, it's really not the land of oranges, movie stars and alternative lifestyles!) We'll see if the imaginings in my head matches up the reality of yurts...


  8. Hey Kate,
    If you got my email and look me up on fb there are photos of my yurt there.

    I am thrilled to have helped swell your support network, and to have made such a difference to you 'support-wise'.

    We all need support, but it's so hard to find when you're as limited as we often are. I went through 9years without anyone to understand what my daily path was like, and after finding Kerry, online I decided to try a local support group too.

    The group has brought me some very dear friends who support and lift me in ways I can't begin to describe. I have never been happier! I can relate!

    It all started with Kerry, for whom I have enormous respect and love. I just wish there weren't so many miles between us all!

    You take great care Kate,
    I look forward to seeing you on fb maybe....

  9. No, not trivial at all! I get the grumpies too. The lack of control over our lives drives me insane and right now today I am having "a case of the miseries" as I like to call it.

    I am a little foggy so posting this may not sound all that great but I am glad to have followed you over from Kerry's site. I am trying to post when I can. I never even thought about looking for comfort through blogs like this, but what a blessing it is to have found you all.


  10. Susie,
    Control is something I struggle badly with, as my hubby will tell you..! I'm slowly getting better, It's easier now my son is growing up and more independent.

    I'm sorry you are feeling those 'miseries', I'm sending positive, elephant-free hugs to you. Hope they help!

    Never have to apologise for foggy-brained posts here, we all speak the same language!

    It's late here, so it's just a short one, but...
    Welcome Susie, glad to meet you, and here's to mutual support hey?



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