M.E.'s darkest moments: I am worn out from groaning!

Llewellyn King: ME/CFS: Into 2012 without Cure or Care

The link above is a wonderful article exposing the reality of M.E.
I confess I wept on reading the quote from the lady who, speaking about her worst moments with M.E. when bedridden and housebound completely, wrote in an email to Mr King:

"I am not sure I can hang on another year, when every day is so hard to get through. Just a few weeks ago, a doctor laughed at me and said there was no such thing as [my disease], and my husband just sat there, not once backing me. That was more hurt than I can carry for another year. I pray every night, 'Now I lay me down to sleep and please, Lord, take me before I wake.' ”

I reckon we have all been to that precipice point when housebound and bedridden. I recall turning my face to the wall, as best as I could, when I could hardly roll over in bed, one time when my M.E. was at its very worst and sobbing "My life is OVER!" Even with deep faith and conviction that God is in charge, exhaustion brings agonising wilderness moments when we feel nothing but alone. Just like the Psalms constantly cry out from the darkest corners of agony, it's 100% natural as children of faith, we grieve for the full potential we see sucked out of us by devastating weakening illness. Even if, in our heart of hearts we're convinced our lives are valuable whatever our disability, our emotions often tell a bleaker tale.

Could we claim to be fully human if  such moments were alien to our experience? We shouldn't feel ashamed of our tears and rage, or count it as weakness. We just need to support one another through the darkest hours. If we have a faith, we need to embrace the truth that sometimes we need resources outside our own limited striving, to lift us gently up from the pit of despair and to hold us cradled when the last spoon of strength we have is utterly spent, till the worst storms pass and even though so sick we can look from a new perspective.


"Be merciful to me,Lord, for I am faint; O Lord, heal me, for my bones are in agony
My soul is in anguish. How long, O LORD, how long?
I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears. 
My eyes grow weak with sorrow" (Psalm 6 verses 2, 3, 6 & 7)

I wish I'd a pound for every time since M.E. struck me down that these words express what I sometimes feel. We know we're not alone feeling these emotions. They've been part of being alive since God was a lad!

What a travesty and disgrace it seems that such heartfelt pleas as Mr King's are still so needed after all this time as a New Year rallying call. Haven't we been campaigning and raising awareness long enough for the world, the medical establishment, the governments, the public, the researchers to take for granted the urgent need for progress right now to cure and care?


But we know different and I'm so grateful for Mr King's articulate call to action. We need to whisper it, croak it, shout it, demonstrate it till truth and justice and healing dawn at last. Personally, I believe God's big enough, loving enough and patient enough to carry us till that day. Even if you are convinced that God is just wish-fulfilment fairytale bunkum, there's still a reason to hang on in there for your own sake and the sake of spoonie friends everywhere, to help make the world sit up and take notice of what's right and what's worth fighting for.


As Llewellyn King writes so well:


"A cure this year is unlikely, but better understanding can start today. Now...Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly."

Angel in Disguise?

Not the best of days, health-wise, but who's counting?


Still very weak, feverish, sick, sore and with added palpitations since the massive hypoglycemic episode I reported  a few weeks ago, plus my immune system going  ape after the flu jab. Bad news everywhere, politicians carving up our lives, press gloomily gloating, crises and uncertainties in research have got the worldwide M.E. community punch-drunk this week.


Angels have the habit of slipping in when you're looking the other way, though, don't they? Had a visit, very rare and very welcome, from my Methodist superintendent minister, my colleague when I was still able to work full time. Since my collapse six years ago, I've been a junior supernumerary minister, an uncomfortable anomaly for those not yet retirement age, too ill to work as a full-time itinerant minister working 24/7, or to work reliably at all.
He had come with no agenda. Just a pastoral visit to a colleague as he is now beginning his time as head of the circuit ministerial team. I had no expectations but a chat with an old friend. He listened and learned about M.E. like very few do. We laughed together, as always. He was patient with my brain fog and spoke clearly and slowly enough for my addled M.E. brain to take in. Almost - some names and proper nouns still elude me!

Then he talked about the new more flexible working patterns and new emphases in ministry that the church is being challenged to embrace. Much has changed in the years I have been forced out of the calling I so love. He talked of how many missed my ministry.

He spoke of lakes and rivers. Deep still places and streams that flow faster between them, sharing the same water, functioning differently, yet as one. He gave me hope that, even so limited as my strength, energy and cognitive function is, there may in future be a place for me to offer more than the occasional service. 

He knows all my limitations. He knows I will never be fit to drive with my lack of hypo awareness and frequent blood glucose dips. He knows I can't do things to a deadline any more. He knows he may possibly lose me from the working sphere for days, weeks or months at a stretch. He knows work needs to be something I can do at my own pace and completed when I am well enough.

 He talked of things that could be done over the internet, using all my skills. Things that could happen from home, or within a very short distance in supportive surroundings. He talked of one to one jobs where I could sit or lie, not needing more than a whisper, just using the pastoral, people and teaching skills I was born with and trained for. 

 He helped me glimpse places my ministry could slot in again within new and established outreaches and communities. He saw me as I really am, who I need to be. Ministry isn't a job or a 9-5 profession. It's open ended and often all-consuming. It's a calling and a longing and your whole identity that can't be put on a shelf somewhere when your body gets in the way. With all these frustrations, limitations and agonies of M.E., he could still see where I could be me, with much to offer.


It won't be easy. It might not happen quickly. There are no guarantees. God never called me to being sure, only to being faithful and open. There are still many obstacles to overcome. Things to think through, pray through. People who also need to be brought into the circle of understanding so we can all support each other with our own unique strengths. This may be the beginning of a journey with precious few signposts or maps.

I can't tell you how good this feels. After so long in the nightmare wilderness, in the church's vision I glimpsed a possible model for how other jobs and businesses could try to make this support, adaptation and flexibility work for all those with severe life-limiting illnesses and very special challenges to tackle.

What I've gone through healthwise all my adult life, and even before that in my father's stroke at 45, places me in a uniquly blessed position to be part of the solution for others, or at least compassionate to hear what they are saying, or not able easily to express.

Only time will tell, but that my "company" is beginning  to even contemplate what it means to enable its broken children to ease into making their unique contribution again, while remaining less than wholly able, is a miracle almost too amazing and beautiful to take in.


Half way through his visit, my toilet cistern outlet exploded noisily, drowning our conversation, pouring a flood of water onto the tiles. It had been overflowing in drips for some weeks, but today it came to a head. And he fixed it! Right place, right time, or the whisper of a loving provision?

My colleague knows he can't "fix" me. But he is open to finding the round hole instead of the square one, into which this round peg can somehow, day by fluctuating day, gradually fit herself again.


Till then, my body is sick, my head is throbbing, but my heart and my spirit is singing!

Hope is the Thing with Feathers

 News is breaking here from Dr Jamie Deckoff-Jones MD, that the Nevada based WPI (Whittemore Peterson Institute) research program has been closed by the institute's CEO, and the facility is now locked down. It's former principle investigator, Dr. Judy Mikovits, is in discussions concerning other institutions to which she may move to continue her grant-funded research.

The whole worldwide community of M.E. patients and carers is at a loss what to think. Where does this leave us? What should we believe? Where should we put our efforts now?


Much of hope, spoons and support has been invested by so many.

Emily Dickinson's poem springs to mind:

Hope

Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words,
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.

Hope feels fragile at trying times. It can get very buffeted about when devastating, disorientating news like this breaks on which much is pinned. But the wordless tune has to carry us through towards a future where the truth will certainly finally be known.

As with other diseases, MS, AIDS/HIV, TB, the path to understanding and treatment doesn't always go smoothly or quickly. But I'm hanging in there with gratitude for all who have done their bit towards pushing forward that cutting edge of research and advocacy. You are all heroes and flame-fanners to me!

In a week when I am asking friends, relations and well-wishers to donate to Invest in ME for my 50th birthday here: Joyce's 50th birthday gift for M.E. (already over half way to target, and only a couple of unhelpful psych nay-sayers coming out the woodwork so far!) Invest in M.E has made clear it is independent of the meltdown that seems to be engulfing its US counterpart. Its statement is here and makes its own position clear. I also hope all research may quickly get back on course following whatever derails it. Lives depend on it.

Please let's never give up hope. Let's gently pull together and keep each other hoping and laughing through the gloom and disappointments. We'll always have each other and good people with integrity fighting on our side. I truly believe tomorrow is in safe hands, in spite of every setback.


No word yet on the main Whittemore Peterson Institute website.

No word yet where Dr Judy Mikovits will be continuing her funded research into the retroviruses that are so heavily implicated in the etiology of M.E.

No word at all in the media, as of 3pm, Monday October 3rd 2011 in the UK.

Nothing but disconsolate tweets on Twitter and the social media.

But that "thing with feathers" will one day have a joyful tweet to twitter about the truth, causes and cure of these diseases that are our constant companions today.
Hanging onto that hope with both hands through this "chillest land" and "strangest sea" till tomorrow dawns!

...............................................................................................
First official news I have seen at 8.30 pm UK time: not adding much to what was understood earlier in the day:
Wall Street Journal Health Blog 3rd October 2011

Finally, at 10pm UK time, a statement from the WPI itself.

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. 

 

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.

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.