The Bloodshot Dark

In this dark room

Where light lamps me sore

Salt and steel

You waft the tide

Drawing its flow

Cradling its ebb the creeping healing

That shades our burning eyes

From the blinding flash of the sudden

And tunes our ears to the throb of earth

Swollen livid muscles glutted with pain

Feel the silk touch of your gentling

Nerve-wrack weak

You catch my stumbled weight

On the lavendered linen-cool of care

Beyond my crozzled corners

The synapses out of sync

Your steady warm word whispers “Home”

Lord, where I am unsteady

Ground me.

Where I am burning,

Cool me.

Where I am fragile glass

Strengthen me

Where I am weak

Be my quiet strength

Pacemaker

Pace me at your steady step

Soothe and strengthen

Through the bloodshot dark.

M.E. and my brain-fog!

Today's typical of a "better" M.E. day, i.e when I can actually slump with the laptop. Or make breakfast with more than tipping a box and lifting a milk carton. Or think and talk and stand without feeling later I've run a marathon!

Like the day last week I put cumin instead of cinnamon on my porage oats. (That could be the menopausal synapses, of course, too!)



Like yesterday when I saw I had written three different months in my Diabetic food log. Not in three months. In three days, like Mon 25th September, Tues 26th February, Wed 27th October. When I felt well enough to Facebook yesterday, I had to delete a post on the wall of an old friend wishing her happy birthday for the 29th. I remembered her birthday was Oct NOT Sept 29th. It wasn't Facebook who had failed to remind me of the date! Lucky my mate doesn't go on FB very often.

Worse today. In the strain of doing several things at once, my brainfog hammered me.

Having decided to start this blog for M.E. only, I tried to copy and paste an M.E. related post from my other blog onto here.

You've guessed. I managed not to copy it, but delete it.

It was all about how it's still acceptable to make M.E.-knocking jibes on "Benedorm" and how the media's full of the conviction that everybody's TATT (Tired All The Time) these days. What? Like everybody with a cough has T.B.?

It took a day to put that post together. I'd already managed to get a couple of referrals from Twitter to read it, according to the stats.

Now, M.E.-addled, I can't remember the bones of yesterday's post enough to recreate it here. 
This is life and if that's the worst that happens to frustrate me today, I'm blessed indeed.
Watch this space.
I DID see a Great Spotted Woodpecker, juv female on one of my garden feeders (another separate blog calls, does it??) which is excitement enough till I've had a lie down!

Why this M.E. blog now?

My story is unique. My story is as common as muck!


My story has folders that overlap endlessly.


Then the folders in the filing cabinet get sorted and some things get shredded.


Here's the folder for this bloggy bit of my life.
The sticky note says: the bits of my life that are especially affected by having M.E (and Type 1 Diabetes) for most of my adult life.


It doesn't "deserve" a blog of it's own. But I do. So I'm going to tell its story because I'm a writer.  That's what I'm driven to do. M.E. can like it or lump it.  I just hope someone will find something helpful here.


My qualifications to talk about M.E.?
None.
Except knowing what it's like (for me) to have M.E. for many years, undiagnosed for 20+ years and for the last four years (diagnosis 2006 in the UK),  in a world still reluctant to believe the truth that science is uncovering, of it's physical origin and devastating nature.


My M.E.-related bloggery kept bleeding into my "catch-all" first blog: "Pinwheels and Rainbows: Sense and Serendipity". Today I decided that maybe I should try and give my musings on M.E. (combined with Type 1 Diabetes, the menopause and any other health related bloggery) a place of their own to gambol and crawl when they need to.


My prayer is that maybe some things here may gel with you, if you're on a similar journey.


Safe touching places are precious.
I offer a compassionate reflective space to others who may wander this way.


I'll listen without looking over your shoulder in case someone more "important" comes along.
Because I'll try to understand.

Five years ago

Five years ago. Sometimes it seems longer. 

I was busy being me. Minding my own business. Glass half full or more often full to overflowing.

I was dressed for work. More than work, much more my whole life than a job. One of the churches under my care was expecting me to bounce in to lead an all-singing, all-dancing all-age worship service. The sort of lively, noisy service full of laughter, joy and thankfulness that many folk think doesn't happen. The sort where newcomers grin and say as they shake my hand: "I never knew church was like this!"

Five years ago. I put my briefcase down by the bed. I'd had flu for days but was pushing through as usual to do what I was called to do. I'd had the annual flu shot, as advised to diabetics in the "at risk" category, a week before. It often made me feel shockingly ill for weeks after, but I laughed and did as wisdom dictated, had the shot anyway.

Five years ago. I tested to make sure my blood sugar wasn't low and going "hypo". It felt a bit like it. Only at the same time so much worse. My body was shutting down. The world was slipping into feverish, rubbery slo-mo. The dog caught my eye, my male tricolour sheltie, with me since the beginning of my ministry nine years earlier. My knowing little dog, who would pant and laugh until you joined him, gently mocking him, then pop his black lips back together and look at you as if you were insane. My wise, brave little dog who knew me better than I knew myself, and still adored me.

"It's alright. I'm just going to lie down for five minutes. Just for a second." I said to him. Mostly to myself,  though, because I know he knew even then he would not see me well again in his lifetime.

The next thing I knew, the steward from the church was knocking at the unlocked front door of the Manse and calling my name up the stairs. I had blacked out and never turned up to take the service.

Five years ago. That wasn't the beginning of M.E. for me. That came most probably back in 1991 when I suffered with giardia (internal worms that love your liver!) and amoebic dysentery while living and working in Bolivia. That's when the boom and bust patterns of M.E. seem to have first taken hold, triggered by the virus and infection and trauma in the immune system. I had been in South America, having the time of my life giving all I'd got and being blessed with much more in return. The first English Methodist Mission Partner to live and work in Sucre, Bolivia. I would never be the same; but it was years before I could begin to trace what had changed in my body. My spirit had so been soaring!

Five years ago. After three severe bouts of shingles in my head, followed by months of pain and illness leaving me intermittently all but disabled, the biggest collapse. The one that changed my life and had me forced to retire from the ministry I love, temporarily at least, struggling some days to function at all.

Five years ago.

Life begins at forty. At forty three I was in my prime.