Snakes & Ladders

Well, long time no see/hear/write and I feel like I have been neglecting this blog and you, dear reader.

It’s been nothing personal --- nothing you’ve done. I’m still very fond of you but circumstances have been against me for a while and I have had to concentrate upon those things which have to be done rather than those things which I’d like to do: like attend to my blog.

Before Christmas, partner was first told that hours would be reduced because of financial shortfall at employers :

Cue Famille Cusp shivering in dark corner wondering where the next scheckel will come from.

Shortly afterwards a number of employees cleared off saying they could not survive on reduced hours and had found alternative employ and then others were very poorly with the Christmas lurgy:

Cue partner not having reduced hours but increased hours and trying to fill in for the people who were no longer at work or able to get to work.

Cue Cusp trying to do all usual Cuspish chores-domestique plus many of the other things partner usually does.

Cue Tired Cusp and Failing Cusp and then Christmas.

Christmas passed by in an interesting manner. Baby Jesus hath smiled upon the Cusp Household in that we did not fall low in the face of the dreadful flu bug which seemed to beset all and sundry around and about us but son of Cusp did succumb to funny virus and infection in eye . The latter was very worrying since he is already visually impaired and has glaucoma.

Cue many trips to hospital and checks and drops and unguents.

All better now --- well nearly ----but it made for a quiet-ish Christmas with many trips up and down stairs with trays of food, providing company, watching videos, DVDs, PS2 games and many trips to hospital and calls to NHS Direct; not being sure if an array of symptoms were due to eye drops’ side effects or funny virus or both.

Cue Cusp and partner v.tired after Christmas

….and..breath….ahhhhhhhhhhhhhhhhhhhhhhhhhhhh ;0)

So that’s what I done in my holidays, innit, and now it is taking many a day to try and pull everything together again and feel like I have some control over the domestics and myself for I have not able to rely on my body (not that I EVER feel I can rely on it) for weeks.

When things are poodling along in their usual family-life kind of way it is relatively (and I say RELATIVELY) easy to try and fit my energy management regime around circumstances and stay on an evenish keel. I can more or less tell what I can manage and what I cannot. I can more or less tell how far I can push my limits without disaster. God knows I have had enough practice in managing what’s left of my energy. But when I am beset by unusual, unpredictable circumstances the whole thing goes to pot. I cannot rest when I need to. There are things that have to be done, people that have to be cared for, animals that have to be fed, cleaned out, walked. It’s no good taking on all the sensible advice about ignoring housework and only doing what you have to do because what has to be done in this house when unusual circumstances arise is more than I can really cope with but they have to be done.

And now there is beginning to be some semblance of the day-to-day routine that passes for normality Chez Cusp…and I am at sea: unable to get used to being alone again, occasionally liking the solitude and the next moment hating it, feeling as if I should be doing something productive but not knowing what and having a horrible feeling that life is passing me by, has passed me by.

….and breath…………………

Life is complicated and I am at that point (as is oft the case with PWME or any other chronic illness) where I could shake a fist at the sky and tell the whole damned thing to clear off, leave me alone, I’ve done my time, I’ve made my amends, done all the right things, listened to the advice, listened to the doctor, the healer, the insurance company and none of it has done any good. All that works is time passing and being careful and cautious and biding my time. I feel like I’m in some religious order locked away from the world. Maybe I should buy a habit ?

Rachel (The Creative One) sums up the dilemma very well:

‘Motivation is not an issue with this illness. Desire to do more, be more, is never a problem’

You progress, you want more, you do more, you wait, you wonder, you fall or carry on ….you’ve done more, you progress….but there’s always that hesitancy, that fear, that feeling of being unreliable to your self and to others so that you don’t feel able to jump back into the game.

As one of her commenters (Nina) puts it:

‘………you can’t be successful there unless you can continuously produce! I, too have gotten (what to me seems) much better, but when I’m in the real world, I realize it’s a relatively tiny improvement…’

And there’s the dilemma again for you can do all the right things but it’s never enough. The rest of the world moves too fast and unless you live on an island worldly matters impinge on your progress and you depend on the love and care of others to survive ---as we all do.

This ME life is one of snakes and ladders