Yesterday I had to gird my loins again and 'just get on with it.'
E, my son, had to go to the dentists and the dentist only works the same days as my partner so I had to take him and then drive him on to school 15 miles away. I really wasn't up to it but 'needs must' as they say and it did give me some extra time with E. who's a jolly old soul and a pleasure to be with (unless it's sleep time and he really wants to watch 'Casualty' !)
Having done the deed I sat in the school car park and got my breath back. Here I was faced with the usual dilemna : it's pouring with rain, I'm tired out and I've spent the mornig so far chasing a child round to hurry up and get ready for the dentists, driven 15 miles to school and seen he's OK for tuck, completed homework and clean clothes and has been soothed after the dentist. Shall I take out some time for me and if I do, do I have the energy ?
There has been a show I've wanted to see at the Gallery in Bury St. Edmunds for weeks. I'm actually very tired. My head aches, my muscles are burning, I have a sugar-low coming on and I really should turn around and go straight back home and sleep BUT I'm sick of being beholden to 'this bastard illness', as Signs calls it, so I decide to say 'Sod it' and drive in to town anyway.
I find a space and walk slowly up the hill to the gallery. I always have mixed feelings about going there as it's a place where I had many meetings when I was working and I was very involved with all sorts of changes. It reminds me of how I used to be and what I could do. I don't like to be reminded. It makes me feel inept and a failure if I'm honest. I know 'this bastard illness' isn't in my head. I know it isn't something I can get over with a bit more will power (I'd have been better years ago if that were possible ---I'm good at will power) but being reminded of what I used to do, be able to do is not a comfortable feeling. And it reminds me that I have done and am doing all I can to combat the ME bogeyman and that awful feeling that no matter what I do I seem beholden to him or it.
Nevertheless....onward and upward....up the hill as well...and into the gallery. Up a steep flight of stairs. I should use the lift which was installed for disabled access. I was part of the committee that campaigned for the lift. I can't use it. I'm too proud so I walk up.
I get my breath again and try to switch my head into positivity and smile at the reception lady. I'm here. At last. I sit in the 'coffee and arty books section' for 5 minutes to adjust to the new altitude (it's a long way up here).
Eventually I have enough 'go' to actually look at the work on display. I'm really glad I made the effort. The show is called 'Traditional Skills, New Thinking Stitching and knitting for the 21st century. It features some great artists including Michael Brennand-Wood
Consequences of Proximities: All Night Flight. Mixed media on board.100 x 100 cm.
and a Dutch woman, Felieke Van Der Leest who crochets the most exquisite outfits for little plastic animals
Now I'm back in a world I understand. Now I'm back where I'm supposed to be. I find inpsiration in these strange objects and images woven with real hair, fancy knitted cushions with lace and ruffs surmounted by a lamb's skull. I can't be a part of this world in the way I used to be. I can't be this energetic person doing 3 jobs at once. I cannot even volunteer to be a Gallery guide because by the time I've driven here (even on my very best day) I'd need a guide for myself. That world has gone. I need to move on. I can make a new world.
I look at my watch and the parking ticket is nearly up. I have to get back. I need to hurry but my legs won't let me. I'm frightened going down the stairs of the gallery to street level in case I fall. My pride gets in the way. If I do hurry, is the Insurance Company using 'covert surveillance' on me to see if I'm more able than I say? ( This is no paranoid joke, dear reader, for it is well known in the ME community, and well proven, that these Companies will use such tactics to try and wriggle out of paying out on a policy).
Eventually I get back inside the car. I just sit and close my eyes. I've done it. Seen the show. I'm 'finished' now and still have to drive back the 15 miles home down the A14 in, what is now, torrential rain. Driving in this state is a challenge at the best of times. I have the radio on quite loud, the window open as much as I dare (with the rain), the air vents full open and the blower on full too to try to keep me alert.
Pulling in the drive I know I've been out of the house for 2 and a half hours. I go straight to bed and sleep like the dead for another 2 and a half hours.
Today I'm sore again, fit for nothing...other than lying on the sofa and typing this three times to get it right with no mistakes and no slip ups.
It's been worth it.
10 comments:
I can just imagine how you felt, walking round the exhibition, that sense one has when soul finds itself on home territory again. I also find it very hard to use lifts - but not because I'm too proud! I get claustrophobic and panicky in case the lift gets stuck with me in it.
My sense is that, in spite of the aftermath (the details of which are unfortunately so familiar to me) it was, as you say, still worth it. By touching in like this you are keeping your foot on home territory, claiming the ground you may one day be able to inhabit more fully - nourishing your inner core. Ok, I'm degenerating into platitudes, but you know what I mean.
A day well spent, I reckon.
Good on you! Although you are tired and are in pain you did something that you wanted to do regardless of anything else. You must feel so proud of yourself, I'm proud of you!
You really are an inspiration.
Now, go rest some more.
*hugs*
I am really pleased that you enjoyed the gallery, that it was worth it and that it inspired you.
There are people that dont know how to do things to give them pleasure; its great that you took the time to do that for yourself, despite the bastard illness!
Cusp - you there? Please make your way over to my place. There is someone there you will recognise at once. And please bring awards back with you.
And THANK YOU - I LOVE HER!
xxx
What an amazing peice of discriptive writing that really encapsulates the awfulness of the bastard illness.
Thank you for sharing this even though it cost so much in terms of your precious energy.
Hope you manage to have a few peaceful days now.
pxx
Cusp - I put a comment here about the awards waiting for you on my blog - but I don't see it! How are you?
Poesie sends love.
Ah, Cusp,I could cry that you felt too proud to use the lift. Been there, done that. I love the 'All Night Flight' work. It is stunning.
Thank you all again for your responses and support. I hope my description didn;t come across as maudlin or self pitying. I juts wanted to get across to people who don't know what it is actually like, in detail, to try and do quite simple things.
It was, of course, worth the effort ---- if only to see Michael B-W's work which is always inspirational (worth googling if you've a mind to) and Felieke's amusing pieces.
Interesting and perceptive comment Kahless dear. Took me a long time to allow myself such small pleasures (long long before I became ill with M.E.) For some it's a skill that has to be learned, earned and maintained.
Thank you all again for your responses and support. I hope my description didn;t come across as maudlin or self pitying. I juts wanted to get across to people who don't know what it is actually like, in detail, to try and do quite simple things.
It was, of course, worth the effort ---- if only to see Michael B-W's work which is always inspirational (worth googling if you've a mind to) and Felieke's amusing pieces.
Interesting and perceptive comment Kahless dear. Took me a long time to allow myself such small pleasures (long long before I became ill with M.E.) For some it's a skill that has to be learned, earned and maintained.
I didn't think it sounded like self-pity at all. Mostly I found myself nodding and smiling at recognizing similar situations I've been in. It's hard going back to places from my old life, even if it is exhilarating to connect with something familiar and stimulating.
I remember hearing once that cancer patients have days they declare to be "No Cancer" Days when they try to forget they are cancer patients. I think it's nice to have No ME days as well, even if there is a price to pay later. Granted, I'm not sure we ever really get to forget we have ME. But saying 'Sod it' and enjoying a little bit of pre-ME days is as good as anything, I'd imagine. I'm glad you did. :-)
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