Wednesday, 28 April 2010

Creativity Rocks!

Inspiration, inspiration, inspiration....! Where does it come from? Asda, Walmart, Tesco? Nothing that simple I'm afraid, has to come from the brain, the very thing that doesn't work so well these days!

Mine is fried by any new thought, anything I've got to turn my attention to, which I was unprepared for.

I often seem to be frying brains, the menu needs to change around here - ! My personal thoughts and creativity leave me when the brain is frying, and that's so hard. My need to switch off the head and relax/be creative, is so much greater, but because it takes longer to get through a simple chain of thought, the time left over for relaxing the 'melon' gets less and less.

I do find myself getting stressed out if I've not had the chance to think things out properly, then I forget details and it all gets messy in my head. I try to avoid that, my house is messy enough, but I like a nice tidy head! (Perhaps I need a cleaner!?? or, a head-hoover!!!)

Because of this I admire creativity in others so much more. Especially in my fellow 'Elephant Carriers', as we have to be really dedicated to create at all. I especially enjoy words, the meaningful ones that 'speak' to me when I need them to. My great friend at 'Lemon-aid'- Kerry, is great at finding quotes and poems which are meaningful. Thanks Kerry! (run over to check her blog....She's a fine woman, and an honest and thoughtful blogger! The link is on my page!)

I have also become fb friends with a very talented gal, Stacy. She writes and records songs whilst sitting under elephants herself. I listen to her songs so much when I need the meaningful lyrics to speak to me. Especially the ones she writes about her experiences of M.E. She's kindly allowed me free hand to put some of her lyrics here, Stacy, thankyou, I have indeed- 'filled my boots'!
I know the process isn't easy, but her determination, honesty and attitude is inspiring- you blushing yet Stacy !???

I'll shut up- here's a taster of Stacy's lyrics, my favourite song- 'Weary Bones'

'Lift up these weary bones and wrap them safely in your arms,
Let me take some shelter till my stormy world is calm.
Let me catch my breath, regain my strength,
Put me on my feet.
But for a day or two I'm asking you,
Oh, will you carry me?
Just for a little while, yeah?
Just for a little while.'

Here's the link to her song, to hear how lovely it is, maybe it will 'speak' to you guys too.

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!

Monday, 19 April 2010

Myself to blame...!

Well, it had to happen didn't it? I only have myself to blame today, the payback for being healthy enough to go out and do something lovely yesterday has me in it's clutches. That elephant is HUGE - he's dancing on me from head to foot this morning....

Enough of him, lets talk about the 'something lovely'.

I own a pretty cute pony and carriage, as you can see he is a very good boy. My hubby and I took him out yesterday for a trot through the most gorgeous countryside and villages. The sun was out, roads were quiet, pony was happy-blissful! Heck, I even got to talk to hubby about some stuff that had been bothering me.... can it get any better?

The sound of hooves on the road, birds in the hedgerow, and distant farm machinery heralding the start of the farmer's busy season, spring had finally got sunny. We had to stop for photographs, people often leap outta cars and snap us as we pass by - or people in the villages smile and greet us. It really is the most wonderful way to bring on payback, that i know.

But, (and there always is one isn't there?) by the time we trotted back into the driveway, I knew I had overdone my day. The dragging feeling had taken my strength, it was all i could do to climb down and lead Merlin away. Hubby sorted him out, fed him and put him away for me and I came home to bed. Which, if I'm honest, is where I've been ever since - but what a way to get payback??!!

I know that people who see me driving the pony, smiling and enjoying myself, cannot comprehend how it affects me when I do this. They don't see how much pain I have, or the muscle weakness/shaking, headaches, neck and spine that is sore to touch, skin sensations, dizziness and treacle-thinking frustration that hits me soon afterwards. Maybe if they did, my life might be easier.

Should we allow our friends to see us when we are bad? I allowed one once, and after a long time had passed (I think she needed recovery time too!!!) she contacted me and we are still friends, but with a new understanding - I know she believes and understands me better now. Should we let our close friends in to see us at our worst-payback? Would this finish or strengthen a friendship? I dunno, and don't really want to experiment, the stakes are too high.

Tuesday, 13 April 2010


Long time no see!
I've been having some trouble getting a blog organised in my swirling blob of senseless brain! One of the most difficult challenges I have with my M.E./CFS (or my elephant, if you're not sick of the analogy by now!) is coping with reading, and writing text.

Just organising the thoughts, finding words that sound like they came from an earthling, (not some alien creature with a 'Teach Yourself English' phrasebook!) and then getting them down in print is a mammoth task for me. I'm often starting blogs, then after a few minutes I'm left disorientated and exhausted by the effort. In real pain and sensory meltdown.

To M.E./CFS newbies this must seem very weird, and kind of irrational-as sometimes I manage to string the sentences together almost coherently!

I can't write if I'm tired, shaking, in too much pain, being spoken to, or there's ANY kind of background noise. I need total quiet to have a chance of having a clear enough stream of thoughts.
I'm struggling big time just now, thinking about packing this blog in, as my husband (never gets it -Bless him!) has been in my bedroom giving me a rundown of something that happened to him yesterday. I know if I tell him to tell me later he'll be upset, so I just sit, and my brain loses all train of thought.

He's gone now, but my train has gone with him! VERY frustrating as I've been struggling with this all week!

It's almost a physical sensation. I'll try to describe it whilst it's happening, excuse any bad or mixed up sentences from here on.....
My head feels different, solid almost. I'm trying to find words and sentences to describe it but a list is easier-
heavy, turmoil, chaos, over-capacity, confusion, jammed up, can't think a thought to it's end - it gets lost-I get lost! I must stop-not the blog post I had in mind today, but I can't remember what it was. Maybe we have hubby to thank!

Humour-gone, coherency-gone, thinking-gone. Sorry!

I will be back !

Sunday, 4 April 2010

Yurts need hoovering too!

Well, I have to say, I've not had too bad a week. A few times when M.E. stopped play for a while, but on the whole, a pretty good week. Which is just as well, as I have so much to do (for a change!).

There are some large-ish DIY jobs going on in the garden, all in readiness for my husband's pigs, hopefully two Kune-Kune piglets, smallish, hairy and not too noisy I'm told (the pigs, not the husband!) At the moment though, the poor porkers have no fencing, and no shed to move into! Ah, well, not exactly true, they have a shed, but it is roof-less!
To save the little piggies from sleeping under the stars, my husband and his father are replacing the roof, along with the fence posts and wire. They work hard together, and with a little direction (and lots of tea) from yours truly, have done a great job so far.

Then there's my yurt, it has needed some cosmetic work on the base/floor for months, but it has never happened. Shame, as I'm entertaining in there this week. I hope my visitors will ignore the plastic sheet around the floor outside, and just take notice of the beautifully clean and neat interior- HA Ha (roll around on the floor laughing, trying to dodge the dust!)
That's my job for tomorrow, may have to recruit help for the heavy stuff- Ben (my son), watch out!!!
Has anyone ever hoovered a yurt? Surprisingly fiddly as there are so many rugs, and my hoover likes to eat them if I'm not careful.
If you fancy a cup of tea in the yurt, pop round, I'll light the fire and put the kettle on. We can sit on piles of cushions eating naughty treats, trying to ignore the plastic sheeting! You are all very very welcome!

Take care, be as well as possible.