I’m Still Standing (Well, Sitting Actually)

I woke up this morning singing “I’m still standing” in my head.  Not because I am an Elton John fan – oh no.  As some kind of fighting anthem I think. (I wish I had woken up singingsomething rocking instead but I think we’ve established sometimes my brain is in control and not my concious).

I’ve been so mega tired and emotional the last few days.  Having a good cry (again) with Mr helped yesterday.  He reminded me of a few things I had genuinly forgotten.  Like how last week I was being Mrs Productive helping out a friend with a self publishing project of theirs and how this exhausted uselessness isn’t here for good.

So by last night I felt a bit better about life.  Although I was very tired when I lay down to sleep I had stomach cramps so had to take some medicine and sit a while.  In the dark I grabbed my memory-jogging notepad (which I keep in my bad with me at all times) and scrawled a few things to sort out today (the first of which was one of those clip on book lights so I can see to write on such occasions!).  Then I wrote down 5 ideas for arty type projects and drawings.  Did someone turn the inspiration tap back on?

In fact now I think about it just before I got into bed I wrote down a list of Things To Do When You’re Blocked (creatively that is).

So.  Good news.  Lighter shoulders today.  Some residual frustration and impending PMT to deal with … but feeling like I am fighting again.

The key was realising (with Mr’s help) that I was setting expectations for myself – no matter how small they were.  I was still thinking “I should be doing x,y,z”.  But instead of the big things like cleaning the house or seeing friends/family, it was little things like drawing to a certain timetable in a certain way, blogging and being “interesting”, even holding out for ‘grand’ gestures from friends in order to feel loved.

Instead – I prosper when I am able to follow my nose, do what feels right – in art and in CFS survival.  I have sensible limits set around that but within the time I have I am able to be flexible. 

So what if I don’t get out of bed until 4pm?  So what if I don’t wash that day?  So what if I scribble nonsense instead of illustrating how I feel that moment with a beautiful sketch?  So what if I spend 5 hours pouring over one ebay auction only to not be sure if I want the item once I’ve bid (and be grateful I get outbid)?  So what if I buy something on impulse which isn’t quite right (when I can afford to do so)?  So what if I haven’t been out of the house to do something fun just for me in over 2 months?

So what if this is how I spend my time these days? 

I’m still finding my way and some days that’s easier than others.  From what I have read life with chronic illness means continual adjustment.  Pressure to do or to deliver doesn’t help.

I’ve tried rigid structure and I don’t respond well to it.  My illness waxes and wanes as do my symptoms.  It confuses me, it catches me off guard, it often makes me angry and sad.  So if I can live with flexibility maybe I can embrace the changes better.

I once read a beautiful Eastern philoposhy idea that has stayed with me.  The trees bend and sway with the wind.  If they stood proud and rigid the wind would snap them.  But they sway and bend in harmony with the wind. 

I wonder if we chronic illness sufferers are a bit like this.  We have to sway and bend with life challenges and joys – but this doesn’t stop us from being ourselves.  Sometimes the wind is gentle and we stretch our leafy arms, sometimes we stand in a howling gale – but we must sway and bend and be at one with the storm.

I want to be a gnarly old tree.

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5 Responses to “I’m Still Standing (Well, Sitting Actually)”


  1. 1 Rachel M September 25, 2007 at 12:47 pm

    There was big smile on my face while I was reading this. 😀
    Big pat on Mr Creative. And warm hug to you. Excellent post, Rachel!

  2. 2 Rosa September 26, 2007 at 6:00 pm

    Great post. I have been thinking lately (in the huge amounts of time for thinking that having a chronic illness allows) about how to get around the whole “you are what you do” conundrum. Perhaps you don’t have this issue, and I hope you do not. I was super active before I fell ill, always trying to work and create and “do good”. Now I cannot do good or bad, I generally just am and that can be terribly frightening when it comes to a sense of self.. and trying not to fill that hole with the idea of myself as a walking (and resting) illness.
    Anyway, I just found your blog and I think it will be very helpful for me. Thanks!

  3. 3 rachelcreative September 26, 2007 at 6:39 pm

    Rachel – thank you! I am indeed very lucky to have Mr Creative.

    Rosa – Well thanks for stopping by and taking the time to comment. Oh I DO struggle with being a human being and not a human “doing”. I’m sure I have posted about this struggle before and no doubt I will again in the future! In fact am having to restrain myself for rambling on about it now in this comment 😉

  4. 4 ouiser September 30, 2007 at 12:14 pm

    WOW! You sound so much better! Emotionally/spiritually I mean. I have visions of black eerie clouds rolling back in the sky and little beams of sunlight radiating down to earth. The sun may not be beaming, but it is peeking and THAT, my friend, is progress!

    So how do we become the wind? He, he.

  5. 5 rachelcreative September 30, 2007 at 5:32 pm

    Ouiser – oh yes I like that! Little beams of sunlight indeed.

    Hmmm – if you figure out how to be the wind let me know.


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