How far have we come?

Heard today, sadly, about a comment  from an employer about a worker with ME who has collapsed and been ordered to take time off.

"Oh, she's the kind of person [my disgusted italics] who goes full tilt and then flops."

No, my friend, (who should know better, professing to be in the "healing" business): she's a actually a person who has contracted,  to quote the World Health Organisation:

"a chronic, inflammatory, primarily neurological disease that is multisystemic, affecting the central nervous system, immune system and cardiovascular system, the endocrinological system and musculoskeletal system. ME can cause a wide variety of symptoms, including changes in sensory tolerance, visual problems, exertional muscle weakness, difficulties with coordination and speech, severe fatigability, cognitive impairment, problems with balance, subnormal or poor body temperature control (due to circulation issues) and severe pain which causes a varying degree of impaired mobility and disability in all cases.

Myalgic Encephalomyelitis affects the brain and spinal cord which control the body, allow thought and sensory processing, causing dysautonomia, impaired thinking and loss of internal homeostasis, the process whereby the body maintains a consistent internal environment in response to external stressors. Cellular metabolism and communication is disrupted, causing inefficiency in all biological processes. This includes the cellular mitochondria which process fuel to make energy, resulting in a deficiency of adenosine-triphosphate ATP with a chronic, severe, measurable loss of sustainable strength on exertion. A hallmark of ME is intolerance to previously trivial effort and deterioration through persistent or repeated exertion (often resulting in relapse).

Current theory suggests ME results from a persistent viral infection and/or attacks by an individual's immune system on the nervous system, musculoskeletal system, and blood vessels. It has been classified by the World Health Organisation as an organic brain disease since 1969." 

Oh, but that would be to quit peddling the patronising age-old dangerous misinformation ME patients have been suffering for decades, wouldn't it?

Sorry - long quote. Rant over.

I also smiled through my gritted teeth again at the sick but increasingly unfunny joke:

"Even the comatose can be put to work. As draft excluders."

Enough. Or I might type something I'll regret (if I could sit up for longer)! 


The Father still loves me!

Always something to be thankful for

This past fortnight or so, just typing at the laptop, sometimes just reaching the keyboard has made me so sick and weak I can't keep up. Let alone cooking. Cleaning out the fish. Answering door/phone to perky dead-eyed salespeople hired not to tell you what they're actually flogging. Standing and speaking at the same time. Remembering what I'm supposed to have just got ready to do. (Living, we often call it!)

My ears are ringing, my eyes feel blow-torched. Muscles jerky and painful. Breaths in and out exhausting as my chest muscles/diaphragm (3 tries to spell that by stages!) are so painful, weak, burning. Yet can't get warm even with heating on (while I can still afford to put it on!). Spirit willing? Tick. Concentration/ co-ordination? Nil.

I try to read to research and plot my novel I so want to motor on with during November's NaNoWriMo mentioned in my last post. I can't make sense of anything, even simple stuff, most of the time at the mo. Thank the Lord for the times I can get on a bit.


I try to birdwatch. My forearms quickly grow too shaky and sick to raise the binoculars. Eyes won't focus or bear the beautiful autumn sunshine. Thanks the Lord I can hear them singing though, sweet as symphonies!

My fault. Agreed to take service I promised months ago and determined to carry through with my resolve. Went to friend's funeral the same week and after a disoreintating busride, was cuddled and chatted to death by dear friends I hadn't seen since I collapsed 5 years ago, from one of my old churches. They'd missed me. I'd missed them. I made it to the afternoon and have been crashed most days since. Silly enough to have my birthday this month too. Overkill!


Doing stuff when I can. Having to put the lights out and curl up to catch up on frazzled sleep when I can't.

"Pacing!" the whispered reminder comes from the few who understand. I know, I croak. It's just that life doesn't....

Blood sugars all over place. Hypo or hyper 90% of time. (Just took me a second try to spot where the "%" was hiding on my supposedly familiar keyboard.). Sugars erratic from stressed-out immune system fighting unseen infections. Not doughnuts.

That's enough for today.

But it's something!

ME patients blood donor ban

"A pint, that's very nearly an armful!" as Tony Hancock lugubriously put it in his classic "The Blood Donor" sketch.

I'm off this morning to give blood. Just in connection with the usual round of tests for my Type 1 diabetes. Not as a donor, ever again, it seems by today's BBC headline. Today my blood was officially declared unfit to grace the veins of anyone but myself!

Click to read "M.E. PATIENTS FACE UK BAN ON DONATING BLOOD" 

M.E. doesn't make the news every day. When it does, the invisible community of M.E. patients often breathes a collective sigh of dread, if they are up to it. We wonder, what will the media manage to mock in the latest headline?

-Will there be a new way of getting a laugh out of "Yuppy Flu"? 
-Will there be a new raft of arguments about the research required to get to the root of M.E.'s neurological causes?
-Will XMRV (xenotropic murine leukemia virus-related virus) be thumbs up or thumbs down as the culprit this time?
-Or will we shudder with impotent grief at another wave of generalised attack aimed at real benefit bludgers, who, of course, some misinformed angry people will see as including all those hardworking, taxpaying members of society who from this devastating illness and others find themselves forced to claim invalidity benefit reluctantly, completely against their nature or aspirations?

Blogging for a few minutes on a good day or preaching for an hour a month does not, believe it or not, constitute the abilty to work full or often even part time. If only! I know, because year after year before diagnosis I drove myself back to working  again and again before another complete collapse.

It got to the point when I was so obviously ill to all my colleagues and parishoners around me, they used to beg me to leave late meetings early. I so hate letting people down that I was thrown into despair at how to do all I was obliged and delighted normally to do while my body and mind were unable to stay upright, too sick with disorientating exhaustion to sleep, caught in crippling pain, uncoordinated, feverish, spaced out, dizzy and nauseous and increasingly unable to perform all the work I so love, or indeed, any work consistently.

Today the headline leaves no doubt. M.E. is real. So real that the health authorities are banning all M.E. patients, in a crash or in remission (i.e."cured" enough to function for a period, hopefully indefinitely or permanently, in "boom" after "bust"), from giving blood. One day soon, we will know exactly what virus or gene is triggering this hellish disease and be in a position to conquer it. (Though cancer and the common cold give us less optimism to hold our breath for that in our lifetimes!). I'm an optimist, though, and I have to believe these headlines are little beacons on the way.

Meanwhile I will go on doing what I can to pace myself into another period of remission. My prayer is that when it comes, it will be forever. My determination is that on that day, I will not be sucked into the arrogance of the "cured" which harangues those still gripped by the illness to "do what I did, and look, I'm fine". 

If I had done that every time in my life when I too appeared "cured" when in remission, I would have hurt and possibly destroyed the hope and joy in many with whom I can now empathise.

Together, one day, we will dance in the sunshine and have our full lives restored to us and be more than overjoyed to graft gleefully in the valleys where we are needed.

Maybe one day, too, we will be able to give "very nearly an armful" again to save our neighbour. 

 

Ebb and flow

I was talking last week on the phone to a friend whose grandson, now in his 20s, has had M.E. since his teens. Our experiences are similar in that when a period of relative "boom" comes in the M.E. energy rhythm, we tend to attempt too much and face "bust" again with almost immediate effect. He tries to climb mountains, then collapses again before he can complete it - he hasn't ever had chance yet to be the man he dreamed he'd be.

The lad's mum has funds enough to send him abroad to the greatest experts in the field. Even they can do little more than tell him what we all know in our hearts. Sleep does not refresh our batteries and our bodies aren't recharged by rest to be "fit for purpose". Once the body is sufficiently drained and exhausted, the pain levels, the muscle co-ordination, the brain's recall, the autonomic systems are in meltdown in ways we cannot predict or prevent.

Walking across a room can still be a mountain or marathon to me! I've had a life of fulfilment, challenge and exploration; my heart goes out to those who have never had enough respite from M.E. to recognise themselves well in the first place.

My little goals are more modest these days, of necessity. Attempting to be as useful as I can, WHEN I can, dreaming of returning to my ministry one day, unable to fulfil the 24/7 vocation of a minister or most days even getting by with basic tasks since my most recent collapse, I've offered to take one service every month or so in the churches of our local Circuit. It sounds so little. But this time last year I could not have offered even an hour a month's voluntary local preaching. 

Last Sunday was one of those occasional services. The steward picked me up and drove me to his church a few miles from my home. Even the journey itself, crunched into the car with its twists and turns on the highway is disorientating enough! 

It now takes me so crazily long to prepare for one brief session in the pulpit and aisle. This is what I do!  Why does it cost me so much now to do it? So long to recover afterwards. But it's the joy and privilege it always was, and perhaps even more precious for what it takes me now to offer it.

People in these churches who knew me "before" are touchingly delighted to see me "facing the wrong way round" again, even if only for an hour. They often say how well I look. Does that just mean "standing up" these days? They see me holding the sides of the pulpit (how it hurts to grip with sore, jerky fingers!) and don't realise that it's sometimes only that which keeps me upright till I can sit down during some quiet hymn or song or reading so the room will stop booming and spinning jerkily, all blare and blaze.

Most don't realise that what I used to do "on the wing" I now need extensive notes for, to keep everything in my head, so we can take the collection in the right slot or remember the punchline to a "spontaneous" illustration. Maybe they think at 49, I've always had this collapsible stick hidden in a closet somewhere, waiting to produce to keep the rubbery pavements from throwing me off kilter! Maybe they are just being kind!


I still chuckle to remember at my hastily-arranged "farewell" service, as other colleagues celebrated their time here and went on to new parishes and challenges elesewhere, as I was reluctantly forced to become a reclusive shadow, one dear lady from another denomination leaned across to me and stage-whispered with a horsey commiseratory pat that set my raw muscles alight with pain:


"I'm so sorry to hear you're jacking in the church!"


I've never "jacked in" my calling and I never will. It hasn't jacked me in, either, or at least God through the grace of his Spirit in Jesus never ever will! But a very different course has to be plotted with Him, now, moment by moment. Trusting in His strength, with no fear of mistakenly thinking my own is sufficient!


Since my hour leading worship on Sunday, I haven't been able to function much. I had rested up to be ready. Afterwards my body had had more than enough. For days now I haven't really had the strength to cook or read or concentrate for more than a few moments at a time.


I once had sessions with an Occupational Therapist, who was slowly learning from M.E. patients why the psychological "treatments" didn't work when the illness was patently all too real and neurological/immune system based. Through the brainfog, swollen glands, untrustworthy vocal cords, in a darkened room with muted light so my eyes could bear it, I told her:


"To me it's a bit like a tide coming in. Moving towards recovery is like waves lapping up the shore; the breakers drag you back a little down the beach before being drawn back up again, gradually towards the strand."


I've had glimpses of high tide and I truly treasure them. Today I'm somewhere wandering among the rockpools, and do those limpets nip!

 

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.