"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.
Showing posts with label boom and bust. Show all posts
Showing posts with label boom and bust. Show all posts
Friday, 8 October 2010
Wednesday, 6 October 2010
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 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!
Thursday, 30 September 2010
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.
Subscribe to:
Posts (Atom)