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.

spoilt by lack of choice

Just how irritably tetchy, like an overwound spring, I'd become wasn't immediately apparent but, (these days) the most minor event goes wrong and, wham, bam ... I'm in there without so much as a by your leave. I feel sorry for the recipient of the agressive verbal outpourings that ensue, it just seems so contrary to my (what was always seen to be) laid-back temperament. To be honest I never suffered fools (especially the supposedly intelligent ones) gladly but, would always deal with the situation in a calmly measured way, at least that's what I attempted. Nowadays it's shoot first ... ask questions later.

On the one hand I know that suppressing anger / outrage can have a negative effect on one's psychsomatic well being but, at the same time, rapidly vented anger leads one into a lingering slow-motion period of regret, the outrage having frequently been disproportionate to its triggering event. Unfortunately I never have sufficient stamina to release the pent up frustration by more directly physical means - walloping a punch-bag, bopping the night away, even going out for a lung stretching high speed walk is out of the question - so I'm left with a fiery verbal temper.

Since succumbing, eight years ago, to this excruciatingly painful, socially isolating, chronic condition, the irritability quotient seems to have multiplied in an almost logarithmic progression. Intense frustration arises on occasions when I've decided to go with ma belle to do some shopping, only to find that minutes after belting up in the car I suddenly feel too discomforted and unwell to pursue this course of action. At other times I arrive at the shop and have to find a place to sit down, in splendid isolation, whilst ma belle does the shopping. Bracing myself for such outings as visits to shops, GP surgeries, or indeed any priorly arranged appointment, swiftly depletes my already limited stamina reserves. Should a last minute change occur to any of these plans, that's when the spring snaps ...

What surprises me most is the high degree of contentment I have in simple pleasures such as sitting out in the arbour seat, observing the garden's flora and fauna, or basking in the presence of my beloved in the evening. I am essentially a happy, easily contented person; I just wish my body would allow me to socialize more, rather than constantly having to fall back on being self-contained. An asocial mode of being is not my lifestyle choice. 

the impossible is slightly difficult

Some things are just so difficult to explain that one just goes on with life, as best one can, unable to share their "different" experience of "normal" everyday activities. Some chronic conditions, even in their relatively moderate forms, can have the most devastating impact in terms of isolation; the combination of pain, sensory-overload - both auditory and visual (and the accompanying agitation and frustration) as well as an excruciating fatigue (caused by unrefreshing sleep patterns) are quite simply impossible to explain to anyone who has not been there and, together, they conspire to prevent much normal socializing!

Even when the worst symptoms are in some kind of remission, my coping mechanism has hardly returned to it's pre-illness state. There are times when, on a social outing, one feels they are going to explode in response to the immediate environmental activity - be it talking, music, lighting, or quite simply the presence of too many other bodies - then comes the difficult task of making one's "excuse" to depart early from the event.

Frequently I notice concerts, gigs, exhibitions etc that I'd like to attend but, I feel unable to pre-book ( even in my current reasonably well phase) as I'm never sure whether I will have the necessary physical and/or emotional stamina to cope come the day! Even when there's no requirement to pre-book, if an admission fee is involved it always seems an incredibly extravagant outlay bearing in mind that, in all likelihood, I will be ready to leave (unable to stay the course) whilst the event is still in progress. At the recent farewell party for the local vicar, it was amazing to be able to sustain concentration for that part of the entertainment I managed to cope with. My recent visit to Liverpool was a different experience altogether when I wasn't "up to" attending any of the exhibitions I hoped to see, or even dining out at a restaurant in close proximity to the inn where we were staying.

I am blessed in obtaining so much satisfaction from spending time in the garden, watching the avian activity, taking photos and videos etc., playing about on the PC, painting and writing as and when urge and stamina are in sync. I've become, in the process a contented homebird! On many occasions I'm able to manage a short walk but, even that activity has its own little idiosyncracies. This afternoon I took a little walk, at a somewhat slower pace than my recent norm; as I tried to speed up it seemed as if the lower limbs hydraulics were in serious need of an oil change; each movement required a conscious effort, as if I was required to lift my feet from some kind of cloying quicksand. And that was on, what had earlier seemed, a "better" day.

I have no desire to be a Moaning Minnie, it's just that I wanted to try and share something of that which I deemed, at the outset, to be impossible.