Clockworkkkkkkkkkkkkk.........................................................

It's a big year Chez Cusp...lots of anniversaries and big birthdays.  I don't really like big occasions...too much pressure and I believe the stress of that is leading to all the dreams I've been having: bizarre, twisted dreams. Dreams about the past, the future, what I've lost, what might happen in the future. Last week, decent sleep was especially precious as each night I closed my eyes and off I went into another technicolour drama-roller-coaster of old memories all mixed up....like some demon had decided to remind me of all the things I used to do but put it through a blender first.

I feel like there's a lot of reassessing going on under the surface. Landmarks have been reached and its time to move forward but I'm unsure about how or what. 

In the normal scheme of things I'd have drawn up a plan with bullet points and worked through it. I was always good at that:..'this is the plan' was a joke in our house because that was how I worked...dreams, goals  and plans. But nothing is normal Chez Cusp....especially inside Cusp where I'm never sure how I'll feel physically or, at the moment, emotionally. Its not that I'm sad. I just feel sort of pressured that time is marching on, I've been living with serious M.E. for ten years and not much has changed for me ...and I want it to.

Recently, a very good blogging chum was writing about loss of independence due to ill health and how that can affect self-confidence, relationships, self-image. J is a real fighter....gets knocked down and gets back up. I get knocked down, lie there stewing ad thinking and then get up again. I know that being ill enough to keep me at home for 10 years has knocked my confidence. I get little glimpses of the old me...the confident in-charge me, the gung-ho me...and instead of helping me to think 'oh that part's still there' it undermines me because I know its not sustainable: I can only keep it up for so long.

The threat of being assessed for my ability to return to work terrifies me. I just don't know how I would manage going to work. I know that most days I can put on the face...especially in interview/meetings type scenarios and probably come across as confident, personable and capable (unless its a day where I cant find the words and barely remember my own name) but I have lost so much. The skills I had are still there but the whole art scene and funding scene has changed. The people I networked with have moved on. The contacts are lost...and most of all I can only do all that for a short period of time. I'm like a old clockwork toy that runs out of 'wind up not long after you've set me down on the floor

At home things are in flux. We have had the threat of my partner's job ending for months. Now it seems like it might be OK except there'll be more working at home (because office space is scarce so they'll all be gievn a laptop and work at home). To be honest that feels like another piece of my independence lost: for all the company and help I get I need a few days alone in the house, to move about at my own pace ( i.e slowly, amblingly) to not have to worry about other people because, to be honest, even after all this time, I still don't really go at MY pace when other people are at home with me: I kind of try to keep up with the flow and then cover up my 'failings'. It's because I still feel embarassed, ashamed of the fact that I'm not the person I was and because I hate the feeling of lost independence; I need someone else to do a pick up of kids or drive to the supermarket but if I can do it myself (even if its too much) I will because I dont want to give in, be dependent, be frail. 

Some of this stuff comes from habit: I spent so long covering up my illness at work for so many years that it's kind of second nature. Some of it is much much deeper stuff from childhood..from being seen as weak and vulnerable and being determined that I wouldn't be perceived like that anymore. I remember an incident in A&E a few years back when I'd had a nasty fall and ripped out three fingernails. The nurse took one look at me and said 'We must get you  in a wheelchair. You look so pale and we dont want you falling over in here.'  She was saying it because she was concerned, caring.....and I was livid, furious at being 'put' in a wheelchair. I felt like it was a punishment for being so stupid as to fall over in the first place ....so everyone could look at me and point the finger in the waiting room 'Look at that goon..can't even buy 5 things in Tesco without falling over'

So many losses and such frustration. So much I want to do and so hard to do them. So sick of still being in thrall to that dark shadow and sick of being incapable of drawing up a plan and working through it: 'This is the plan'......what's the point ?

Time - He's Waiting in the Wings

Time - He's waiting in the Wings: one of my favourite Bowie songs when I was just a little Glam Rocker with my platforms and satin jacket......and now he seems to be lurking and hovering in the wings and afraid to do his part.

Time in my head is kind of linked to energy. As I 've said before, I'm sure I've suffered from the bastard illness almost ever since I was a little Glammer in my own eye. I've had periods with no energy; periods with more energy and some periods when I had strange bursts of energy that seemed short lived and urgent like a sparkler fizzing towards the end of the wire: I had to be busy and get everything done before the energy disappeared up my own Roman Candle in a puff of smoke.

One of the things that seems to have changed in the last seven years since I became an official PWME is that time is all askew. My relationship with and experience of time and space no longer seems in sync with other peoples'. At the start, this was because my sleep patterns were so awry that I slept in the day, woke at night, crawled back at 3a.m. and woke at 11 a.m. or 1 p.m. I still have periods when my sleeping is askew but mainly they are just that --- periods, phases.
However, what I cannot seem to get used to ---- even after all this time ---is that everything takes longer.

My energy levels mean that I'm slower. My confusion and memory lapses mean I often have to do the smallest things several times over before they are right because I forgot where I was, where I put something, what I was thinking. My concentration means that I'm easily distracted or sent off in another direction. And then, even when I seem to have grasped the nettle and I'm finally on track, I get tired again so it's time for bye-byes and a nap.

The 'nap' might be 1 hour, 2 hours, 3 hours and that’s a big chunk of the day when it takes you nearly an hour to wash up the breakfast things and the children are home again by 3.30 or you have to be out at 2.45 to collect them.

I think that, apart from all the other numpty howdedos of the last few weeks, that is why I have become so tired and frustrated since Xmas: I had all sorts of things kind of planned, that I wanted to do and thought 'Yes, by the second week of January, I 'll have done 'x' and then I can do 'y' and that’ll lead to 'z'. That's how it was when I was at work. I was organised, methodical had a plan and stuck to it. There were always plenty of irons on the fire, pots on the stove, plates spinning (probably part of my downfall !) and now the irons stay in the bloody fire til they melt, the pots boil over and scald the hob and the plates wobble and topple and smash and I still cannot get the idea that it is all possible but that it just takes longer.

I will get there in the end but sometimes 'the pretty way' doesn't seem all that picturesque.

As a P.S. to the last post about the Arts Council's failure to support Disability Arts: there is now a Yahoo Group; Disability Arts Defence to campaign about the cuts and the erosion of the Disability Arts Movement