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
7 comments:
Hi Cusp - Good to see you writing again. I recognise all the things you mention here, and I think you have described the condition very eloquently. Those firework bursts of energy are almost fearsome in their intensity and I'd find myself committing wildly to all manner of things I would not be able to fulfil. It's a bit like mania.
I think January is so hard because one is recovering from all the hullabaloo of Christmas. Even without small children, it still does me in.
Love this Dali picure.
Hi Cusp,
I hope in it all you are being kind to yourself and not putting too much psychological pressure on yourself to "try hard"
;-)
Haven't been around for a while, but now I'm back and it has been a pleasure to read your words that help sum up my understanding of what some of my clients go through, so thank you for your honesty.
pxx
Hi Signs. Sadly my whizzbang energy is a thing of the distant past. I've had the bastard on my back for yonks and in days of yore I would indeed have these odd bursts but no longer. I think there has been a bit of recovering going on --interspersed with nagging from certain insurance companies.
Ah Kahless my dear -- not been through such a rosy patch yourself. I'm afraid I do still 'try hard' in some areas. It's ingrained, second nature. However, with maturity and grey hairs, comes a certain what the 'heck' attitude.
Ah Pixie, Good to have you back in the land of blog, my dear. I'm glad you are feeling well enough to surface again and spread pixie dust.
I'm sending you giant *hugs* from my little corner of the world.
I'm so sorry that you have been having such a hard time I'd love to offer a solution to you, really I would, but unfortunately all I am able to do is offer my support and a an ear if you need one.
take care
hugs
xo
Thnaks so much for your support Azirca. No there's nothing you can do dear --- just a dip, like we all have. Time, patience and a good hard prod from myself will make it al turn round when the time's right.
Thanks for the hugs ;-))
Ah, Cusp, you sum it up so well. The only way I manage to achieve anything is to seize the day (when I have a good one) and take my energy levels into the red. Impulsive, reckless and to hell with the consequences. Sometimes you have to stick two fingers up to this illness. Otherwise … what's the alternative?
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