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!
On Sunday I was planned to lead worship at a church where the congregation understands more than most about M.E.
Not only have they lost a full-time minister in their circuit to the disease, i.e. me, but one of their own beloved local worship leaders in the congregation also has M.E.
She and I discussed how we were both doing at the moment, comparing the muscle pain that makes even wearing a bra uncomfortable when the chest, diaphragm and stomach feel swollen with poison.
We talked as only those who really undestand can, about those IBS-like symptoms and those days when even though you can get up, appetite is nil. Contemplating the complex processes of fancying food, preparing it, cooking it and having the strength left to lift fork to lips to eat it, is just one step too far!
Overdoing things, plus passing viruses always end up flooring us both, in spite of our positive attitudes. People know us both too well in our church communities to imagine it's all in our minds, thank goodness! (Though we've both had more than enough of that attitude from elsewhere including medics!)
It was a "relatively" better day for us both. Relatively better, of course, or I couldn't have been there to take the service, nor she to be in the congregration! I was leading my one brief hour of worship per month at her church. I still can't manage any more.
Being there for Sunday meant I couldn't be at the circuit preachers' meeting for fellowship the following day. I can't do things day after day, still, or my body can't recoup what it loses with each effort. Since then I've been virtually housebound and sleeping for England, trying to recover. My throat's now sore and glands swollen with that brief hour of projecting, laughing, sharing, chatting, concentrating. My muscles are spasming now at the slightest move and I feel like I've just swum a polluted Thames with David Walliams this weekend! (I wish! Well done, that man!)
My aim is now to gradually recover enough to manage something similar (preach not swim, silly!) at another church some time next month, and if all goes to plan, the month after too. We talked about how this itself was a fantastic thing to be thankful for, compared to early days when I could hardly stand and speak at the same time at all, let alone every so often on a good day.
She had had a particularly bad time the previous week and still looked as washed out and doddery as me! (We are both in our middle years, rather than the pensioners our bodies take us for!).
When I talked to friends in the congregation that I hadn't seen for over a year, how I'm planning to raise funds for Invest in ME for my 50th birthday next month, a few asked if I had thought of talking to the Circuit Admin Assistant about it? Why not publicise this more widely, considering how many people know me from my ministry in the area in past years?
I hadn't actually thouught of that. I always feel very reluctant to push any cause related to myself, but it all fell into place as a possibility when several folks enthusiastically went on to remind about the Circuit newsletter which has regular circulation round all the different Methodist Churches in our area and has a readership beyond the pews.
So that's next. When strength returns a bit! I'll contact the editors soon so it can be mentioned (warmly!) there, with links to the charity and to my fundraising page
Joyce's 50th Birthday Gift 4 M.E.
I really think this will help many people who know people with M.E. like myself and the worship leader, to have a chance to do something positive.
In spite of being completely wiped out by going to church this weekend, even with a door to door lift and wonderful support all the way, it was a true blessing as always. I usually don't even have the health to walk to my own local church round the corner! Many were touched and reached by my message, they said, and being in the right place at the right time, for me, the congregation's suggestions might just have unseen ripples into the future for everyone with this devastating disease.
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!
