One of the things I have never sought to hide here at
It is hard to pinpoint why I can sometimes veer off course. Indeed early this morning, as Ste sat up in bed with his headphones jammed firmly in his ears, committed to his morning
Flow is not possible. The fug, the fog, the pain, the…disconnect and hyperawareness makes it impossible. “Normally, absorption in a task – an immersive flow – can lead you to forget that you feel sick, but my fatigue made such a state impossible. “ Again, running through quicksand…it renders effortlessness forever tantalisingly out of reach. You never get traction. You’re always reaching. Just trying to get to stable ground from which you can take a certain, solid step forward.
Sometimes the pills work. Sometimes they don’t. Sometimes I am lazer focused. Sometimes I can barely remember how to boil the kettle. Always somewhere I will be aching. It is more physical than depression. More emotional than exhaustion. As Sarah Wilson so eloquently says “Contact with people hurts. Humans really are too much for me when I’m not good. Why? I don’t know. It’s the accountability, I think. I don’t want to explain myself. I can’t. How can I?”.
Above all else it is a terrible bore. I bore myself with it and I know I bore those who cannot understand why life, work and commitment to almost everything is so very hard. How much my willingness to commit is so frequently compromised by my sheer inability to function. How utterly frustrating it is to not always be you. To be a lesser version of yourself than those around you imagine you should be. To so frequently disappoint.
As of today, and yesterday, one of the worst symptoms I experience is daytime sleepiness. I can spit out two hours of decent work and then my eyes will be closing, Drooping as if I haven’t slept for a week. So I will get on the floor and do my
In the evening I am as awake as I can only imagine normal people are the moment they open their eyes. So awake that when it comes to bedtime I begin my usual struggle – a series of rather dramatic sleep rituals I remain deeply suspicious about altering – in an effort to switch my mind off again.
Much of the problem with chronic illness is always about accepting it and teaching ourselves to manoeuvre around it. To accept that if we do more than our bodies can cope with in a flurry of lovely days, we will pay for it with the flare of forgotten symptoms. That in my case restless legs will drive me crackers (but the medication for them: a drug for Parkinsons Disease will make me even sleepier), I will sporadically forget to breathe, my gums will bleed, the sides of my face will swell, my whole body will throb and I will not be able to pull a decent sentence together without describing every object as a “dooberry bit“. As in “Pass me the dooberry bit please. “ (Could be the remote control, my phone, a hairbrush or a salt cellar!) or “Did you remember to pick up my dooberry bit?” (Ummm… milk? My prescription? My son??!!). It is woeful. In fact at times like these I AM woeful. Bless my stupid heart.
I am telling you this so you understood why I come and go. Why my work here at
Today I am trying. I am sitting here wrapped in a
Now do be a dear and pass me my dooberry bit won’t you?