Archive for September, 2007

A Brighter Mood

Feeling brighter and lighter.  Even seem to have my creative juices flowing again.  I have a painting under way and am getting giddy with excitement about the new camera I’ve just ordered which has some magical arty applications. 

Physically still low.  Viral/chest infection still lingering nearing the end of week 9 of suffering.  Have a particularly chesty rumble of a cough today.  Very tired and weary.  Stomach funny.  PMT abound.

BUT brighter in my mood.  Which is excellent news.  Thanks (I reckon) in no small part to Mr Creative’s ability to throw perspective on the things my brain gets wrapped in knots about.  Him reminding me (and giving me permission should it be needed) to just BE.  To do whatever and not conform to an expectation – mine or anyone elses.

So I started by deciding it was ok to be lounging in bed for half the day.  And then that it was ok to do arty things that aren’t pretty or brilliant or appealing to others but to just do what comes to me.  And in doing so maybe others will find a connection and maybe not.  It’s all ok.

Mr Creative gives me perspective when it’s needed.  Friends are great at showing me another side or view to my stories and pre-occupations.  In turn I have the strength and confidence to self soothe, nuture Rachel and let her do what is needed. 

It’s not perfect.  I’m not perfect.  I still moan and sigh and clench my fists and get frustrated.  I still feel ill and aching and exhausted.  But I’m not bad.  I’m not a bad person.  But it’s hard to remember that you’re an extraordinary person when the grind of chronic illness gets to you.  So I thank my friends and my family for offering a hand, a kind word and a smile.


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.


Head is in a spin.  When I think I know my illness it confounds me again. 

I want to focus on my life and not my illness.  Maybe then it will go away.  Get better without me noticing. 

Isn’t that madness?

How to focus on life and not illness when it is so dominant.  It forces such a monumental scale down in my life – I can’t just do what I want to because when I do it makes me body ill.  I can switch off thinking about consequences and push and fight.  Then at some point crash and know nothing but pain and exhaustion and upset.

I’m feeling quite low and quite mad these last couple of days.  My framework is askew and I’m drifting.  I’m lacking pure joy.  I’m lonely and frightened.  I’m so terrified I’ll never live my dreams that I piss away the time I do have on fruitless pursuits.  I find myself shopping almost certainly for some magic answer to fill a hole.  I don’t know how to tell people I’m having a bad time.

I know this will pass.  I’m hoping it’s PMT.  But there’s all this time stretching ahead of me with so little to fill it with.  I want to be happy.  I want to be successful.  I want to be inspirational.  Instead, right now, I’m a wobbly mess.

Indecision, Ebay, Exhaustion and Another Frustrated Grrr

I’m so fed up.  I want to go for a long walk in the fresh air.  I want to do something physical and move my body.  But I am so very very tired.

I seem to be on indecisive overload.  I blame ebay auctions.  Oh, and the fact that it’s agonising sometimes making a decision with ME/CFS. 

I’ve been worrying about the pens I use to draw with.  I know there are more important things to worry about AND I am not doing very much drawing at the moment … but this hasn’t stopped me trying to figure out a better solution for “pens” to the point of mini obsession.

The background … The pens I use now for drawing have a fibre tip and are disposable.  Try as I might I can’t find a scupltural re-use of the used pens and it seems an eco crime to keep buying them by the carton.  Plus I am so heavy with my technique that I tend to grind the nib down long before all the ink is used.

I discovered a new drawing ink which can be used in fountain pens without clogging them up – this is the key to a new way of drawing.  Hmmm.  Except I have now bought two fountain pens (budget pens) and am not satisfied.  So I am spending hours pouring over ebay auctions looking for a quality pen for a bargain price.

Ebay auctions with ME brain fog are not the best combo.  I feel all in control of what I want to pay and then other people get involved.  Sigh.  I’m not brilliant at fast reactions these last few days.  So I get all fuddled really quickly.  And fuddled isn’t a prime ebay status to be in!

Do I bid on this pen I like in a slightly undesirable colour now, or do I wait and bid on the same make of pen from someone else in a better colour but used … but the first auction ends a day before the second and there’s no knwoing how the price will go … AND the person bidding on the second auction is the seller of the first so he’ll no doubt sell it on for a profit … Oh dear.  Too many factors.

I know this isn’t strictly ME – but I can’t help wondering why I am putting myself in the path of so much indecision and confusion when I know I’m not in a state to do so?  I figure it’s because there’s a little thrill of the chase with ebay.  Plus it’s something to do.  How sad is that?!

I also suspect part of me thinks “if I just had the right pen THEN I could get back to drawing …”

But I think the lack of drawing is more to do with the utter exhasution I am in at the moment.

The viral chect infection seemed to get a little better.  Now it’s fighting back.  Last night I had such a bad wheezing attack it stopped me and Paul in mid meal.  It’s not funny now – it’s been over 8 weeks since it started and it’s only marginally better.  Sigh.

My doctor said “plenty of rest”.  How do you add plenty of rest to my routine?  Short of inducing me into a coma there’s nowhere much left to go.

I am, of course, being sarcastic.  I’m just incredibly frustrated and fed up at the moment.  I really really don’t want to hear anyone say “how are you?” this week.  I can’t face it.

I really don’t want to let anyone down but … I am crap, ok?  I am close to loosing it – except I haven’t the energy to be angry.  So it comes spitting out as snotty tears. 

On the positive side although I’ve had crushing exhaustion for the last few days I’ve been relatively pain free.  Whoopee doo.  Small mercies.

Maybe it’s time to do a ‘reasons to be cheerful’ post … but I think it might be through a snarled smile today.  Grrr.   Bloody ME.

Tribute to Healthy Spouses and Partners

I just read a fabulous post by A Chronic Dose about The Healthy One.

An extract:

the reason no illness is ever truly invisible is because the people who love us can decipher the many signs and symptoms of illness no one else can. I think it’s important to explore what it’s like for our partners or spouses when a shared illness is invisible, because it isn’t easy. It isn’t fun, or glamorous, or fleeting.

And it certainly isn’t fair.

I mentioned previously that my husband can tell from the single word “hello” if I am having a bad day.”

It’s a great post.

And this is the comment I left:

“I am also lucky to have a crazy husband.

Although chronic illness can put tremendous strain on a marriage I like to think it has built an even stronger bond between me and my husband.Even though there is fear, sacrifice and struggle – we are left in doubt of our love and devotion to each other.

Whenever I shake my head and think “how can he love me when I am like this?” I have to remind myself that I do him a disservice in thinking so little of him and his prospensity to love and care for me, and to help me to be the best I can whatever the circumstances.

And I remind myself that if the roles were reversed I would be there for him fully and wholly (though perhaps not with quite as much grace or charm!).”

And here’s one of my favourite inspirations about loving relationships and chronic illness taken from an article called Coming To Terms With A Life You Didn’t Plan on Melissa Kaplan’s site Chronic Neuroimmune Diseases :

I was also berating myself and feeling guilty about all the things I could no longer do routinely – cook, clean up, enjoy hobbies or sports or fun outings. I worried that my husband was getting the end of a very pointy stick – wasn’t I a drag? Wasn’t he sick of doing all the work? Didn’t he wish he had a healthy wife? How awful is this for himThen we talked about what bothered him worst about my being sick and his responses surprised me – an always-messy house, a lousy social life and my tendency to overdo and then relapse. Now we simply look for things to do that aren’t tiring, like movies, going to museums (we bring the wheelchair for me) and going for long drives together. We got a cleaning service to come in every other week, making the house livable again. And I vowed to ?When my husband and I talked about these issues, he pointed out something very valuable to me: If the situation were reversed, would I still love him, he asked. Of course, I said, stung he’d even asked the question. Then I realized: I was assuming the worst of him when I assumed he’d love me less because I’m sick.

work on resting and not overdoing it. It’s made a small – but significant – difference. We feel like we’re “handling” it. And, hey, life isn’t so bad! The best part: I don’t think often about this stuff anymore.”

I Want To … But It’s Not Happening

I’m feeling oddly gloomy today.  I can’t explain quite why.  But I am making attempts to adjust that mood – it’s just isn’t happening.

I sort of feel like I’m looking for an answer or an inspiration.  I’ve identified a handful of books that I’m sure will help.  In fact – I realised I have books on my shelp, some favourites and some as yet unread, which would also help.  I want to read them.  But I just can’t.  I can’t bring myself to hold the book and turn the pages – let alone follow the lines and make sense of the words.

I sort of feel like I’m missing some of the things that reward and offer me a cathartic outlet. 

I want to blog – but even as I type I think it’s worthless and confused and really not that interesting.  The scraps of brain fluff from Rachel’s head in a whiney Eeyore tone.

I want to draw.  But I can’t do it.  I think of things to try, I move the pen and it’s just awful.

I want to paint.  But, aside from the physical effort of organising materials and space to enable me to do so, I have no idea what to paint.  And I know that painting without a clue leaves me with a mess and a saddened heart.  Plus the idea of moving the brush back and forth – well I love the movement of the paint and colour – but the physical action of moving my hand and arm that much … well I know at this stage my muscles will let me down.

So it’s just not happening.

I’m not even going to get into wanting fresh air and to see the outside world, to have fun, see people I love and do a whole list of other stuff.  A whole ist of stuff which is so smal and innocent – but so out of reach.

Now I’m just moaning.  I’m frustrated for sure.  But it’s simmering as self loathing for not being able to do things.  Hence the gloominess.

Making Sense of Change – A Quote

Thought for the moment:

“The only way to make sense out of change is to plunge into it, move with it, and join the dance.” Alan Watts (US Philospher)


Push It 11 Sep 2011

for ME Research

CFS Links & Resources

See my entire list of CFS/ME/CFIDS links to sites, articles and resources via
New stuff is added all the time.