Two steps back

Reasons M.E. sucks number 76

It stops me doing stuff. Sometimes, it’s because I’m too ill to get up. Sometimes it’s because my brain won’t work. Sometimes it’s because I’m in too much pain. Sometimes it’s because the sheer effort of planning enough rest before I take part in anything, and the fear of consequence, is overwhelming. I deal with these things every day, and have kind of come to accept them.

This month, a new obstacle has raised its head. I’m going to have to step down from my role as poet in residence. Not through lack of skill, or lack of interest from the talented people in Secret Severn, but because I can’t manage public transport on my own, which means I can’t get out to see the artists at work in their studios.

An invisible aspect of M.E. is brain fog. Brain fog feels as though someone has reached in to your mind and twisted up all the normal paths of thought. This happens when I overload and it’s pretty unnerving. I get confused and can lose track of where I am. This means using public transport alone isn’t safe for me and I have to rely on taxis for getting around. Taxis cost money, and purse strings have been pulled, so there are no longer funds to support my role. I’m incredibly sad, frustrated and unsure what to do next.

Undoubtably, the work has taken it’s toll. Producing good posts, editing photos and seeing folk takes time and energy and I’ve been ill since my last visit. The thing is, I’ve loved stepping up to the challenge of meeting so many new people, and even enjoyed my spell as an emergency steward in the gallery. The positive feedback from everyone was a tremendous boost, both as a writer, and personally.

Sadly, any future visits to artists studios have had to be cancelled, as well as my fledgling plans for plunging in to giving a reading or two and running a workshop as part of next year’s trail. Having to lose all this for the sake of a few pounds dispiriting.

There are still poems to be written, based on the work I’ve done so far, and I’m hopeful I’ll be able to continue working with the lovely people I met. Right now, this change of plan, as well as the general low that comes from being ill is tricky to deal with. My confidence is pretty dented, and I’m finding it hard to find resources for rebuilding.

Sometimes it feels like it’s time to stop trying.*

* I pride myself on positivity, and am an expert blessing counter. I am having a day off today. Normal service will resume shortly. I hope.

Lurking Lurgy

Ah, it had to happen. I’ve had such a good run since Christmas, but this week has brought the familiar warning signs, swollen glands, vibrations in my limbs (always a weird one), a body that seems to have forgotten quite how to move, and a brain that’s slowly shutting down, to the point of only being able to tolerate QVC.I know these signs, and I know the balance needs to be redressed. 

Knowing this, I shouldn’t have visited my mom and dad on Thursday afternoon,(bacon sandwich and looking through old books, nice,but not too taxing), and I certainly shouldn’t have gone out for dinner on Friday.

 Or should I? Feeling loved, laughing, chatting about nothing and everything are things that I miss a great deal. My main communication is through online messaging, which is great, but I know a lot of folk are busy, and it’s hard not to wonder if they do a little sigh when my avatar pops up. Reconnecting in person really is good for my heart,soul,my spirit. It gets me through the lonely days. 

I’m feeling a bit sorry for myself. Well, mostly just frustrated at this silly half life I live. Having said that, I am lying here watching birds from my window,and catkins becoming bright and plump. I have a lot of thinking time, and do still make notes. These vary in coherence, but still give me some material to work with . The days when I can’t write feel wasted, but taking time to heal a little will mean I am able to write again soon. And I really did have a lovely time on Friday.