memo to myself and others re chronic illness

I've just been reminded, once again, by a friend's misunderstanding whilst communicating via Messenger, of how much one loses when living with a chronic illness - in my case moderate ME (myalgic encephalomyelitis). 

What they had failed to understand is how impossible it proves / has proved to plan any events ahead. Even a meal out locally, with my beloved, can only be cofirmed at last minute and, even so, is an extremely rare occurrence. I have lost contact with most of those I had considered "friends" prior to succumbing to this illness, almost 15 years ago, and have had to rely, to a large extent on the proverbial mountain coming to me.

UPROOTED

A general mode of tetchiness rapidly transmogrified into an explosive compound of anger, frustration and despair. All of a sudden, slow oozing droplets of distress became a raging torrent of tears. The trigger for this outburst was the conclusion of Zadie Smith’s “NW”, as dramatised for lasts nights transmission on BBC2; the drama itself had plenty of pathos, quite brilliantly portrayed, but much of this, though moving, still left me as an involved observer of the characters lives but, far from an emotional wreck.

What really led to my emotional eruption was the closing scene where Natalie and Leah, regardless of their present more prosperous middle class status and location, almost yearn for the life and companions of their far from glamorous early lives together with their friends from that era. That early life was in Kilburn, an area with which I was quite familiar when I lived in NW6 in the early to mid-1960s. Even so, it wasn’t even the specific location that triggered my emotional collapse; their awareness of having roots in a community where friends and acquaintances retained significance.

It was almost as if a curtain had been raised on my social and emotional stage, a platform on which I stood alone and rootless. Having been born in Canterbury, where doodlebugs celebrated my nativity, I have absolutely no links or memories of this place. My parents moved us on a couple a couple of times in my early preschool childhood in Sussex and Hampshire, there was little chance of having or retaining any significant friendships. My clearest memory of our time in Bournemouth is playing with a toy red lorry whilst shouting out “mackerel, fresh mackerel” and misguidedly crunching an acorn or two. I also recall being in isolation hospital, together with my big brother, and seeing my parents on the other side of a glass screen, and also simultaneously remembering the excitement at having my very own tin of dentifrice.

From there, we moved to the industrial north, to parts of Lancashire, West and North Ridings of Yorkshire, and county Durham all before leaving school at the age of sixteen. Shortly after leaving school I travelled alone to the Sussex coast for my first temporary employment, whilst in the meantime my parents had moved to rural North Devon where I subsequently joined them and found further employment until I was able to start nurse training in Exeter. Since the age of 14, whilst a patient in hospital, I’d known that nursing was my ideal job but, sadly due to an inability to adapt to nightshifts it didn’t work out so, a brief return to N Devon preceded my move to London NW6 to work in Ministry of Labour HQ. Once again, whilst residing in the big smoke, my parents had moved on, first to Staffordshire then, three years later, to a small market town in rural Lincolnshire.

Having burnt the candle at both ends, indulging an appetite for various intoxicants and exotic substances, a mental health breakdown ensued and, I visited my parents for a few weeks rest. This rest swiftly took on another form as a cocktail of beer, spirits and sodium amytal, led to me putting my fist through a few windows before being picked up by the local constabulary, and a consequent period of sectioned containment in a psychiatric hospital on the edge of Lincoln. Ten months later I emerged back into the real world, returned to London, only to discover that I could no longer cope in that environment and, a return to Lincolnshire was in order.

From Lincolnshire we moved to a village in West Yorkshire from where I decided to apply for university to study Philosophy and Theology as a ‘mature’ student. Having received four acceptances, purely on the basis of interviews, I decided on University of Hull and one year after graduation pursued post-graduate studies in Sheffield.

I have lived in my present part of North Yorkshire since the late 1970’s but, it took considerable time before I took on any sense of belonging, eventually attaining a wide circle of friends and acquaintances through both my arts related and, subsequent, church related employment. My social life expanded greatly from the eighties of the twentieth century through to the early noughties of this century. Meeting ma belle Helen in  the last year of the old century, and marrying her early in the first year of the present century, has been by far the most wonderful event in my life. My love for her grows with every passing day but, I still manage to upset her with an angry tetchiness that simmers just below the surface of me.

Since succumbing to moderate ME (myalgic encephalomyelitis), late 2003, all contact with (apparent) local friends, indeed the friends themselves, have evaporated from my life. From being quite gregarious, I was transformed into a semi-housebound sad-happy git; no longer able to venture out to (or cope with) gigs, theatre, jazz venues or church services, even visiting the town centre (in the company of ma belle chauffeuse) can turn into a most daunting venture.

Where are my roots? I don’t seem to have them!

The church, where I had latterly worked as caretaker/ steward, turned its back on me because my illness, which lead me to an abrupt termination of employment, was interpreted by both vicar and curate felt as my deliberate letting them down. Indeed, when early in the illness I managed to attend a service, John the curate suggested to me that I was brazen/ had a nerve to show my face there. The only lay  member of the church, at which I had been a housegroup leader, a group leader on the Alpha course etc., came to visit me was to invite me to be another bum on a seat for Back to Church Sunday. Localised secular friends have been equally negligent, since the illness took hold of my life.

Isolation, loneliness, is the baggage that seems to accompany the onset of this dreadful illness – Myalgic Encephalomyelitis.

#ME – There and Back Again!

Sometimes it seems that even that moderately low plateau of stamina, is a level too high to return to. At present, a dispiriting pain and ache level of exhaustion seems intent upon taking permanent residence in my limbs and torso; at times its tentacles seem to stretch discomfortingly into head and psyche as well!

There’s always a price to be paid for even a modest additional expenditure of physical and emotional stamina, even when that expenditure itself seemed beneficial. Recuperation from payback seems to be tidal in nature; just when one thinks that the energy tide is in it swiftly ebbs away.

On Saturday 17^th some long standing friends made their way across the Pennines to Harrogate. Upon their arrival at the Cedar Court Hotel they ‘phoned to invite us over for beaucoup de catch up conversation and an early evening meal. The three to four hours spent with them passed in what seemed like one hour tops! Stamina resources didn’t seem to be a problem at all, I simply basked in the socializing experience.

Next afternoon, our friends joined us chez nous, for further chats and an early evening meal’ Fortunately, I’d already prepared a curry, earlier on the Saturday, so there wasn’t too much effort involved in dinner preparation.

Once again the few hours together seemed to pass at supersonic speed. For a while I felt as if my stamina was heading back to pre-illness levels and, I felt quite on form to co-host our monthly Bible Study group, chez nous, on the Monday afternoon. The study and fellowship proved rewarding as usual.

On Tuesday 19^th a degree of payback kicked in. A shattered painful exhaustion, swiftly metamorphosed from simple over-tiredness,to a sharp burning sensation on the uppers of my feet and simultaneous excruciating pains in my upper limbs, Meantime my torso felt crushed and bloated. That’s just a fragment of the discomforting regimen of the day. Wrist, elbow, and back supports were intermittently required, alongside a frequent recourse to tramadol.

By the Wednesday morning I felt as if I was being gradually restored to normality, only to regress on subsequent days. At least I’m now having less recourse to painkillers.

By the beginning of this week I feel as if emotional resilience has returned; all that remains are my more regular aches, pains, and sudden onset bouts of exhaustion.

 As I look out on blue skies, all’s well with the world.

of flight and storm clouds

Yesterday ma belle et moi spent six swiftly fleeting hours, 14.30 onwards, at my freshly re-discovered friend Kay’s apartment, where we enjoyed much conversation and a wonderful array of refreshments. Before venturing out I’d already had to resort to sundry medicaments, having experienced a considerable degree of discomfort, but during those socializing hours I, thankfully, only experienced the most moderate discomfort.

The subsequent restless night came as little surprise and, as per my norm, I re-emerged from the duvet realm, this morning, feeling more than a degree under refreshed! Early afternoon found me still in reasonably good spirits, considering the previous day’s exertions, but no sooner had my optimism (in matters of health) begun to take flight than the storm clouds rolled in.

A sudden throbbing ache in both biceps necessitated an urgent squeezing of the upper arms against the torso. Shortly afterwards the all too familiar intense gnawing discomfort in the armpits took hold. A painful ache in the wrists, alternating between dull bruise-like and sharp burning throbs, was somewhat alleviated by the application of splints, as I awaited the relief proffered by an additional dose of tramadol.

The disposition of my upper limbs underwent a most flamboyant choreography as I shifted them from an extended posture behind the back, to clamping them tightly by my side whilst I sat on my splinted hands. The armpits continued to feel tortuously tickled, hollowly crumbling, provoking an intense sensation of dis-ease and nausea.

Having recovered sufficiently from that earlier dis-ease, I am now settled down with my beloved, to enjoy Prokofiev’s ‘Cinderella’ ballet [BBC4].  This festive season, the Beeb have already treated us to The Nutcracker Ballet as well as a ballet based upon Alice's Adventures in Wonderland - how's that for pampering!

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my New Year Greetings have been posted on 'Mal's Murmurings'

A Special Friend

I've started this post several times but, whatever I started to express seemed somehow irrelevant. It's not that any of my postings has much intrinsic merit, only that which a particular reader may put upon it alongside its utilitarian value, to the writer, as a discipline which places some kind of order or value on the (recorded) aspects of their everyday experiences.

No matter what I set out to express or recount this time, one primary event seemed to overshadow it. After a few rollercoaster years of brain tumour induced ill health Kate, Cathy's lifetime friend , finally lost her battle shortly after her 30th birthday, and nine months after the birth of her wonderful son Joseph. There are times that I consider myself "good with words" but then at others, on occasions like this, the appropriate words just won't fall into place. Come to that I can't even wrestle them into place!

I can't see how anyone who ever met Kate could fail to be touched by the warmth of her smile, a heartwarming smile which she could still display, even whilst undergoing some of the most distressing and disorienting effects of her illness. At times she seemed to defy the expectations of the doctors who treated her; a sturdy determination underlay a vulnerable frame as she once more fulfilled the desire to be back home with her husband and son, rather than laying in a hospital bed.

Cathy feels as if she has lost a part of herself; this is a loss for which there can never be a replacement, a very special friendship - that of kindred spirits - since pre-schooldays. My thoughts and prayers go out to all her family. The world is a poorer place for her passing but, the community of saints has been greatly enriched.