Like Clockwork - a response

Thought it easier to respond to all those comments to my last post by writing another.

Firstly, thank you so much for all the support, advice and suggestions.

Looking back at the post yesterday I felt quite embarassed at writing such a whingey, depressing diatribe. I try to be upbeat and positive and maintain a kind of 'just get on with it' attitude. However, having mentioned this on Facebook I was reminded that actually it's OK to admit to being down once in a while and, actually, if the boot was on the other foot i.e if I was responding to such a post I'd say the same as all of you.  I'm just not good at giving myself permission to be negative --- in public anyway.

It was actually an outpouring based upon several days of feeling slightly unwell, with a bad back and everything, everything being so difficult and complicated --- not actually because of my health problems but more down to the fact of other aspects of my life here. Having a disabled child and a very old and disabled dog makes things much more difficult for anyone: even trying to find the right car. I bought a 'new' car just before Xmas and it has been distastrous: we can't get my son's mobility scooter in it as well as all the shopping; the boot is too high for the dog to jump into so I have to lift him in and out (hence the bad back), the seat is all wrong for me and the person who owned it before me saturated everything in Febreeze and despite all my attempts I cannot iradicate the chemical smell. We wanted to book a holiday but everywhere was wrong because of my particular needs or my son's ...too smelly, too hilly, no proper disabled access etc etc etc. It just seemed like nothing was easy earlier in the week.

I know too that my partner working from home will be O.K. We've been together a longgggggg time and adapated to no end of different situations. I felt even better once I'd made a start (if only a small one) on redecorating what will become the office. I just needed to take control, make plans.

I DO make plans, 'to do' lists and keep to them mainly but in the last post I was thinking of the sort of 'blue sky' lists I used to make...the big dreams...the progression of a career, creating new work, paintings, films, moving etc. That's what I miss. Everything now is so diluted and small and minor. Whenever I have tried to go for big things (which take a lot of time and effort) I have been thwarted and left undone. For years I have had to settle for everything being small and piecemeal, fractured instead of the constant moving forward and earlier this week it just really got to me.

I need to pull in my horns and accept my own pace and carve out my own space

Thank you all again for all the support. It's great to have such a wonderful sounding board

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 ?