Archive for May, 2007

Things I Enjoy In Spite of CFS

Things I enjoy in spite of living with CFS:

  • blogging (erm, obviously)
  • drawing
  • taking photos
  • laughter
  • listening (friends, family, peace of my garden, music – in small doses)
  • watching (clouds, people, trees blow in the breeze, my cat being a cat, good tv – in small doses)
  • day dreaming
  • chocolate – in small doses
  • shopping (via the internet these days but I get to take my time and I get to shop at any hour of the day)
  • having a cuddle
  • my own company

Everything should have the caviat “in small doses”, “in moderation”. 

Too much of anything is not good for me – my tolerance is lower than once it was.  Many of my pleasures are simple, quiet and kind of unassuming compared to life back in that fast lane.  But I’m happy.

I swell with pride that I am able to appreciate small details in life and gain such enjoyment from them.  How happy am I that I can watch a tree sway in the breeze and feel joy from something so simple which costs me nothing.

I’m not necessarily saying I would rather get a tree than a tv … I’m not quite that enlightened.  But that you know what?  It’s ok to enjoy the little things. 

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Anonymity Isn’t Easy

So I started this blog as a place to let off steam about living with Chronic Fatigue Syndrome (and keep some of that stuff off my other blogs).  A place where I could be a bit more anonymous so I can talk freely without worrying everyone around me.

But I’m rubbish at being anonymous.  I was going to reply to your comments yesterday and realised that would reveal my identity.  But the whole point is not to need to think so much “should I, shouldn’t I”?

I figure those who read around blogs and visit my other blogs will spot very quickly who this is anyway.  Seeing as how the mood from my two main blogs, and the forthcoming abscence from posting are in perfect snych!

I will never make a secret agent.  There’s another career hope dashed. 😉

So this is my partly coming out post.  I am a multi blogger with not enough capacity to log in, log out and assume another identity 🙂

Lesson Learnt: My honesty is engrained all the more by CFS.  Simplicity is being who I am.

Here lie the ramblings of rachelcreative when she’s feeling all in a knot about CFS, illness, disability and life.

It’s Feeling Like A Bad Day

It’s feeling like a bad day suddenly.  A bad bad bad day.

Everything is annoying the hell out of me and I am powerless, frustrated and angry. 

This is the kind of day when my t-shirt is too close to my throat and it drives me insane.  Any other day I wear the same t-shirt, the same clothes and it’s fine.  Today I am constantly aware it is there – choking me.

My glands are so very tender, to me they feel swollen (the doctor may disagree).  I’m weary and tired and weak like yesterday and the day before but today I petulant about it.  My whole being shouts about how unfair it all is.

I hate everything.  I mean I knwo I don’t but this mood I am in takes a grip and I’m so frustrated about every single thing.  I’m angry at what I can’t do, at what I try to do, at what I have to do.

Stomp and punch and flounce – expect I don’t have the energy. 

Slow computer, hair out of control, clothes that itch and annoy, flabby tummy that suddenly seems in the way, throbbing neck glands, aching jaw, forgetting things and being so annoyed with myself, aching and weak muscles that let me down and I just want them to do what their supposed to, to be normal.

Spelling Backwards And Other Difficult Things

I was reading in Katrina’s Bernes book last night about one diagnostic test for CFS. 

There are many so if you think you have it please read up – this one test is not itself a singluarly diagnostic indication of CFS!  That’s the small print sorted.

This one was “fun” enough to try at home.  In fact there were two I tried from the following category:

Difficulty with cognitive functioning

– serial 7’s (counting backward from a 100 by 7’s)

– spelling words backwards

I started with the counting.  I asked everyone in the room in turn to count backward from 100 in 7’s.  I thought this was kind of cheating as by the time it was my turn I would have heard the answers!  They all did it easily though got a little slower past the forties.

When it got to my turn I said “100,  93, … … … … …”. Oh dear.  I knew I could break 7 into a 3 and a 4 and that would make it easier to find the next number … “so take the 3 off 93 to give me 90 … them take … oh … what’s the other bit I need to take off? … erm it’s 3 and … oh what was the number I’m supposed to be counting back in … 100, 93, oh right yes – 7’s! So if I break 7 into two number to make it easier …”

I never made it past 93.  Not after 5 attempts and listening to everyone else doing it.  Interesting.

Well, I never was good with numbers – I’m better with words.

Spelling backwards!  “Test me! Test me!” I yelled.  And you know it was fascinating.  I could do it mostly as long as I thought very hard and thought a while before I started.  But if I just started spelling straight off (like my husband did when I tested him) I just wanted to spell out the second half of the word and then the first half – and I knew it was wrong but carried on anyway!

 So “resting” backwards for me was “i n g r e t s”.  “humble” was ” e b l … h u m”.  It was hilarious – for about two minutes.  And than it started to dawn on me this was for real – this is really my misfiring brain exposed.

I’ll do some now – saying the word to myself and then spelling out loud.  here’s what I got:

  • discussion “ion cus dis”
  • trapped “detrppa”
  • alternative “ev …. iv …t …n a … lta”
  • hopeless “ssepaho”
  • understoof “doostoounde”

Oh dear.

It’s great in a way as it tells me more about what’s happening up there (or not happening).  Kind of scarey.  Kind of like a new party trick – one which I think only I find entertaining and only in short bursts until I catch up and realise this is quite serious.

Not that I need the tests to know I am impaired as I am having problems typing words the right way around forwards today!

I really am ready to rival the bear of little brain!

Happy Frustrated Happy Weary

It’s such a strange sensation to feel happy, content and ok about yourself – yet at the sametime feel crappy and frustrated. 

I’m content but have a background hum of things I want to do next.  But I haven’t the energy to do them.  Plus a moment after thinking them I forget what they are – so I’m continually coming up with the same “want to do” things and promptly forgetting them in a cyclic rotation.  Which has to be wearing in itself?

So I’m choosing to listen to the happiness and let the background hum – well, hum but not be entertained.

Hard Simple Things: Having A Wash

These day I tend to have a wash every other day – sometimes if I’m really unwell I go three days. 

I’m not particularly proud of this fact but needs must.  The only people who get close enough to sniff me on a daily basis understand that when energy is limited it’s sometimes better to spend it on things that make the days enjoyable/human and not on things that make the day cleaner. (See The Spoon Theory)

Some days I feel really disgusted with myself.  I think how lazy, how horrible that I don’t wash every day. 

Some days when I start to wash I think I really am letting myself down because it’s so simple and so easy to just have a wash!

So I wash and promise that I will definately wash every day from now on.  No excuses. 

Then I dry myself and think ” my arms are a bit wobbly”.  Hmm.

Then I brush my teeth.  Even though I have an electric toothbrush (which is much less effort than a manual) after a moment I need to sit on the edge of the bath as I’m feeling a bit tired and weird.  Hmmm.

Then I rinse my mouth and my brush and dry both on my towel.  Ok so now I feel a bit weary.

Then I remember I really must brush my hair.  Now holding my arms up to brush and moving them and co-ordinating these efforts is quite a task some days.  So my arms are definately a bit weak now.  Hmmmm.

Oh and as I have washed my face my skin has become tight and super dry so I must put on moisturiser – oh and first I need to shake/squeeze some out of the bottle.  Now I need to sit on the edge of the bath again while I apply it and co-ordinate my hands and muscles to puch it around my face.  Hmmmmm.

 Now I put the moisturiser bottle back up on the shelf.  Oh boy – getting really weary now. 

Oh, and as I’ve been using water I probably need to put some eczma cream on.  Now – most days I just think about that and decide I haven’t enough of anything left in my body and stopping to do one more thing is just too much.  I’m calculating how much energy I need to get from the bathroom back to the safety of the bedroom.  Sitting in the bathroom isn’t comfortable or warm especially in pyjamas – so I have to have enough energy to make it back along the landing (the whole 5 or 6 foot steps that requires).

Oh, and of course I forgot to say that at some point I need to put my clothes back on and I get a bit cold even with the heater on.  I realise I had forgotten that putting clothes on is quite tiring.  Hmmmmmm.

So I flush the loo and stagger/stumble from the bathroom like a wobbly greyhound in slow motion just released from the traps.  I propel myself to the bedroom and flop into bed. 

I think to myself that I am probably just exagerating – I could have put that eczma cream on and now my eczma flare-ups are itching.  But my body is not responding easily to the idea of even moving let alon heading back for the cream and I sense I am breathing heavily – I am suddenly aware how utterly exhausted I am.

And then (welcome back brain) I remember why I only wash every other day. 

Thursday afternoon blessings count

Just back to my corner of the sofa after an ‘informal’ meeting out in the big world about me and my health. 

It’s so peaceful and quiet – such a contrast to that big world and it’s bustle.  So a good time to count my blessings:

  1. I can see and appreciate blue sky and fluffy clouds floating overhead
  2. I love my husband and he loves me
  3. My laptop lets me talk to you
  4. I have quietness
  5. I have thoughts in my brain
  6. I know myself
  7. I love myself
  8. I have creativity and imagination
  9. I have security and a home I love and lots of things
  10. I have family and friends who love me and trust me and are good to me
  11. I have freedom in my own world and my own mind
  12. I have potential, possibilities, dreams

There’s more.  Much more.  Blessings are also relative I think – I could list running water, heat, food, free medical care and so on. 

It’s a list giving a flavour you see, only a snapshot – but good to share the joy of living.  Happiness and phsyical health are don’t not necessarily have to be in step.  I feel cruddy and lucky and calm.


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