A Fruitful Misery

Seems like I have a permanent ticket for a roller-coaster ride, not that I particularly requested or enjoy the experience! The journey involves states of physical and emotional health, by which I mean health shortcomings.Just as I’m getting used to feeling a dose of well-being, random pains and discomfort have a habit of leaping out to chastise me; whatever task I’m managing at that particular time, a throbbing burning pain in wrists, a sharper pain in elbows or, the nagging hollow bruised, nausea inducing, discomfort in the armpits strikes, calling an immediate halt to whatever activity is in process. (By activity I mean something akin to reading a newspaper or magazine, or maybe surfing the web on tablet or laptop: it is indeed only on very rare occasions that any of these activities are permitted as prolonged a period as thirty-minutes!). An added joy is the Damoclean sword of permanently imminent, frequently occurring, gullet, stomach and colon flare-ups.

More recently, the familiar neurological ailments have been partnered with an unrelated depressive anxiety. Some days I find myself in sudden floods of tears, concerning love, beauty and transience, fearing being alone and upset at the brevity of human life, especially as I’m now in my mid-seventies and, have become increasingly in awe at the amazing interdependence of everything in the whole cycle of life and, that nothing is wasted in nature’s economy. The primary cause of my current bout of anxiety is related to concern about my beloved OH’s impending aortic heart valve replacement operation. The operation will be of four hours duration, followed by a couple of days in cardiac intensive care then, four or five more days in the hospital.

This will be the longest period that we have been apart since our wedding over nineteen years ago. Apart from being my wife, lover, companion, confidant and chauffeur, she has increasingly become my carer. Whilst she’s in the hospital I won’t be able to visit her, owing to travelling involved. Since the onset of my chronic illness (moderate Myalgic Encephalomyelitis) even the, less than two mile, trip into town can prove emotionally and physically overwhelming, but ma belle will be in a neighbouring city some eighteen miles away. My (step-)daughters have offered to take me but, the prospect of such a journey makes me realize that I’d be in no fit state to be a bedside visitor (as I’d have to anticipate the ordeal of the return run).

A sizeable bleeding rodent ulcer (presumed basal cell carcinoma) has in recent weeks become an additional irritant and, I will shortly be attending an appointment in the dermatology dept of the District Hospital. Oh, what joys we are all heir too!

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.

minor travel major travail

Just where is that emotional stamina hiding; come to that, it would be useful if I could uncover a resource for topping up my rather limited levels of the physical variety. After a short trip across the Pennines, about which more later, even my already constrained ability to concentrate on any sustained reading has gone into abeyance. At least I’m hoping it will return! No matter how much I enjoy looking out onto the garden, the heavily overcast and frequent rain-sodden days do little for one’s morale.

 

After a morning of extremely vividly disconcerting dreams, I finally felt sufficiently alert to remove myself from the bedclothes at around 11.15am, thirteen hours after availing myself of their embrace. As my beloved doesn’t go to her place of employment on a Wednesday it made the rest of the day more bearable. By about 4.30pm I felt it necessary to rest my eyes, at which point ma belle enquired whether I needed to lay myself down on the sofa. At the time it didn’t really seem at all necessary but, within half-an-hour my legs began to suffer a dull throbbing ache, feeling as if they’d been waterlogged.

 

Finally I had to admit my OH was right and, I really did need to lie down; no sooner had I reclined, in supine posture, than my wrists began their far too familiar nagging ache requiring a swift application of splint supports. Just another ordinary day!

 

                                                  ***

 

Now comes the report on that trans-Pennine journey, although, in terms of mileage, it was a short drive, to me the outward journey seemed a far too protracted arduous nightmare. Spastic colon, and acute diverticular discomfort set the tone of the adventure; within the parameters of a 70 mile route, I most urgently required a loo break on three occasions, the first of which required a diversion from the route we were travelling.

 

The SatNav redirected us, via the Old Skipton Road, across desolate sodden moorland. This route didn’t help at all as a kind of agoraphobic panic attack overwhelmed that attention which had previously focussed on my painfully aching abdomen. When we eventually arrived at the hostelry where we’d be spending the night, it was encouraging to see they had at least four draught ales on offer. As we approached our upstairs accommodation the heat in the hallway proved overwhelming, as was that which greeted us in the room.

 

That evening we attended a wedding party, the purpose of our visit, at a nearby Jacobean venue. On arriving at the venue, I managed ( whilst leaving the badly lit car parking space) to trip on a protruding step as ma belle and I sought the relevant hall entrance. The entrance was attained via an ill lit awning tent and, once again I tripped as my foot fell from the edge of the footway.

Not a good start; since my days as a union steward I’ve been well aware of health and safety issues, and the ill lit irregular causeway would certainly have been a major concern. As I’m prone to giddiness, and an associated fear of falling (such that I will only take a shower when my beloved’s around), I wasn’t able to relax at all.

 

Inside, the venue was disconcertingly sprawling and, we failed to find the quieter lounge. We spent best part of an hour, but seemed much longer, sat at a table in the bar area chatting with one or two family members. Just the noise of chatter became overwhelming; part of my illness means that I find it difficult to cope with crowds or noise so, really, I was in the wrong place. My total alcohol intake was less than half of the pint of ale I’d imagined I would enjoy.

 

Ten years on from succumbing to this condition (moderate Myalgic Encephalomyelitis), it becomes increasingly hard to understand that I once, not only coped with but, whole heartedly, enjoyed a quite gregarious lifestyle, pubbing, clubbing, politicking, wining and dining, leading  house groups and more!

 

Back at the inn, the landlady turned down the radiator at our request and supplied us with an electric fan and opened the skylight, the only window in the room, to allow some air to circulate. Most of the night was spent restlessly on top of the bed; music from nearby filled the air until 2.00am after which I became aware of the swoosh of traffic, presumably from the motorway. Further distraction was proffered in the form of other guests returning to the inn, as the floorboards groaned and roared their disapproval of human footfall. A worn out washer on the hot tap in our en suite, erratically appliquéd a kind of water torture onto the other aggravating layers of distraction.

 

Having missed out on food the night before, I was looking forward to breakfast but even this hope remained unfulfilled. Still feeling rather stressed, and upset by and commenting on my trip up experience of the previous evening, I interpreted a nervous smile from Helen’s brother as a sneer and duly threatened to deck him. At that point I quit the breakfast room.

 

Our journey back across the Pennines was a far happier experience, travelling predominantly on motorways advocated by the disembodied voice of the SatNav.

for this ordinary day ...

What a relief; today I feel much more my usual “better-day” self! Yesterday was the kind of day one always hopes to avoid; from waking-up, after a familiarly intermittent non-refreshing pattern of sleep, and throughout the whole day and evening I felt numbingly exhausted, despite the fact that the excruciating pains in my hip and left limb were quite markedly in abeyance.

 

Last night, as I [un]settled down to sleep, that once far too familiar painfully hollow sharp bruised ache in my left arm took over. Having already taken painkillers, I duly applied a wrist splint which seems [occasionally] to alleviate the nauseating discomfort. A nausea inducing dull tenderness in the armpits soon became apparent; I had to remove my [not at all tight fitting] pyjama jacket which began to feel as if it was constricting armpits, upper arms and shoulders.  

 

The minor setback followed eight days in which I had felt the brightest I could remember for a considerable time. Concentration, alertness and general sense of wellbeing were on a, far too rare, high consequent upon the acupuncture treatment received on 31 January.

 

I feel really blessed in having visits from a physiotherapist, trained in both Eastern and Western models of acupuncture, who has considerable experience / understanding of ME [Myalgic Encephalomyelitis] both as a practitioner and a fellow sufferer. Being enthusiastically athletic, it must have come as quite a blow when she succumbed to this wretched neurological condition. Working as a physiotherapist, she had noticed the detrimental effect that exercise was having on some of her clients; at the time I doubt whether there was any inkling that this could become part of her own experience.

 

Today has been a wonderfully relaxed time in the company of my beloved, exchanging sweet nothings, and catching up with some recorded TV programmes. For this ordinary day – I give thanks.

and I'm feeling fine ... ailments excepted

Oh, the sheer delight of a nice warm shower; there are so many things we tend to take for granted, thus depriving oneself of that real appreciative thrill. I admit to having gone through quite a long period of avoiding too frequent a shower, having found the effort involved far too enervating; by the time I’d towelled myself dry I needed a further bout of bed rest.

The acquisition and installation of a secure shower seat alleviated some of the more dauntingly exhausting aspects but, even then, when I stand up my sense of balance (within those steamy environs) is insufficient for me to feel at all secure. Fortunately, my beloved OH is there to proffer assistance at my now more usual, although spasmodic, evening shower time.

******

Anyway, last evening’s shower proved especially beneficial; a most recently acquired acute pain extending from the neck and upper spine across the shoulder blade had made it difficult to even put on my shirt as I rose from my bed. My beloved applied generous amounts of ibuprofen gel all around the affected area. An attempt to lay back down proved even more painful so I persevered with getting dressed as, in any case, ma belle chauffeuse (aka Helen, ma belle, my OH, my wife, my lover, my bestest friend) was preparing to take me to the hospital for an X-ray and blood tests. The shower certainly alleviated the shoulder pain, even though it rarely seems to help sundry other painful ailments.

It seemed strange hobbling into the X-ray room posture made awkward with the shoulder pain, as the area to be photographed was my hip! What’s the connection, you may well wonder; so I proffer an hypothesis. On Tuesday evening, the night before last, ma belle et moi ventured out to the branch labour party meeting at the Catholic club. The meeting was due to start at 7.30 and, we duly arrived in good time on a blustery rainy evening. Unfortunately the doors of the venue were not due to be opened until 7.30 so we had a little time spent exposed to the elements. By the time we’d got in and sat down, my hip and lower limbs felt extremely uncomfortable, so I had to keep shuffling around to try to get comfortable; I suspect the changing postures involved, in  these hip-pain alleviating manoeuvres, were responsible for unusual stresses on the shoulder.

******

This afternoon the physio arrived chez nous to apply the magic needles. As I relaxed a beautiful warm glow seemed to permeate my limbs, after which I experienced a wonderful carefree rest in my favourite supportive high back armchair. Over recent years acupuncture has proved a great source of pain reduction and stamina boosting for me, a convinced sceptic until I tried it!  

And, I’m feeling fine!

The Hummingbirds Foundation for M.E. (HFME)

Just wanted to share this exciting news:



*Please repost widely* *Please repost widely* *Please repost widely* *Please
repost widely* *Please repost widely*

This month A Hummingbirds' Guide to M.E. makes way for a new organisation:
The Hummingbirds' Foundation for M.E.

See below for details!

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A new international, uncompromising Myalgic Encephalomyelitis charity has
been created!

The Hummingbirds' Foundation for M.E. (HFME) is a new international M.E.
charity (founded by Jodi Bassett).

The HFME's mission statement:

"The HFME is dedicated to fighting for the recognition of Myalgic
Encephalomyelitis based on the available scientific evidence, and for
patients worldwide to be treated appropriately and accorded the same basic
human rights as those with similar disabling and potentially fatal
neurological diseases such as Multiple Sclerosis."

As many of you know all too well, the situation facing M.E. patients
continues to worsen.

It is so rare to read information purely about M.E. any more, that doesn't
mix in a large amount of 'CFS' misinformation. Flawed concepts such as
'ME/CFS' and 'subgroups of CFS or ME/CFS' are also unfortunately gaining
popularity.

No matter how you look at it, it seems that it will be impossible for us to
make any progress with M.E. advocacy without some more uncompromising
advocacy groups.

The HFME is not only a genuine and uncompromising voice for M.E. patients
but also speaks up on behalf of all those patients misdiagnosed with 'CFS'
who have other diseases, and who also deserve a chance at correct diagnosis
and appropriate treatment finally.

M.E. patients and patients misdiagnosed with 'CFS' who have non-M.E.
diseases need to, and can, work together to achieve common goals. Fighting
for the bogus disease category of 'CFS' to be abandoned benefits all patient
groups.

The HFME acts in response to facts, logic and ethics. There is no other
agenda than helping all the patient groups involved to finally be treated
justly and in a scientific and ethical manner, and accorded the same basic
human rights those with many other diseases take for granted.

I hope you will want to be a part of this new initiative. Most involved are
very ill and disabled, and so we need a large amount of people to become
involved and to each contribute the small amount of time and effort that
they can spare, for this to work.

Even though many of us are very ill, we can move mountains if we each
contribute what little we can and work together with integrity and
intelligence. (Friends and family members of patients etc. are also of
course welcome to participate too.)

Please email me (Jodi Bassett) for details.

Paid membership in HFME is not yet available, but will be available soon.
The organisation of the foundation is still in the early stages, although
the HFME website is now complete.

To view the new Hummingbirds' Foundation for M.E. website, or to learn more
about the HFME, please go to: www.hfme.org



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What are the aims of the HFME?

*To disseminate scientifically accurate information on Myalgic
Encephalomyelitis (M.E.) to M.E. patients; to their carers, family and
friends; to the medical profession and other professions which deal with
M.E. patients; to policy makers; to M.E. advocates and activists and to the
general public as per the paper What is Myalgic Encephalomyelitis? and as
further discussed in HFME.

*To oppose false and meaningless disease categories such as 'CFS,' 'CFIDS,'
'ME/CFS,' 'CFS/ME,' 'ME-CFS' and Myalgic 'Encephalopathy' as per the papers
What is Myalgic Encephalomyelitis? and Myalgic Encephalomyelitis is not
fatigue, or 'CFS' and as further discussed in HFME.

*To defend the M.E. community (and those with non-M.E. diseases misdiagnosed
with 'CFS') from counter-productive 'activism' strategies such as renaming
'CFS' with some variation of the term M.E.

*To promote appropriate research based on proper understanding of M.E., and
to oppose flawed concepts such as the 'subgroups' of 'CFS' or 'ME/CFS'
concept.

*To be a voice for those suffering from M.E. who are facing mistreatment and
abuse due to the false notion that M.E. is the same thing as 'CFS' and is a
trivial illness or a mental illness characterised by 'fatigue.'

*To be a voice for all those patients misdiagnosed with 'CFS' who do not
have M.E., but other illnesses including: cancer, fibromyalgia, various
post-viral fatigue syndromes, athlete's over-training syndrome, Lyme
disease, Behcet's disease, PTSD, depression and other mental illnesses,
burnout, thyroid or adrenal diseases, various vitamin-deficiency diseases,
and so on. To encourage each of these patients to reject their 'CFS'
misdiagnosis and seek a correct diagnosis and appropriate treatment,
finally.

*To enlist the help of human rights groups, medical professionals and the
quality media to help to achieve the above stated goals as is their
obligation and duty. (A duty that has unfortunately been almost completely
ignored for the last 20 years, with a few notable exceptions).

This is a summary of the full text. To see the full list of aims, and a
discussion of the reason for each aim, please see:
www.hfme.org/abouthfme.htm



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HFME shirts and badges etc. are now available at Cafepress

Lots of different items are available featuring the HFME logo, to help
spread the word.

Check out:

www.hfme.org/hfmeproducts.htm



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What will happen to the old HGME website?

The www.ahummingbirdsguide.com

website will be maintained for some years to
come.

It is no longer appropriate that the main website (the HFME site) also serve
as my personal site and feature and sell my artwork and so on, so this site
will become my personal website. A small number of minor pages of the HFME
website will continue to be hosted on this site however due to the huge
amount of work required to transfer over every single page (this applies
almost wholly to research and article pages by featured authors). The site
will also host redirection notices for one year. The site will also feature
a small amount of information about M.E. taken directly from the HFME site,
in order to educate anyone who comes to the site about M.E. and the HFME,
and to direct them to the HFME website and the work of the HFME.

Please update all links and bookmarks accordingly. Webmasters please note
that redirection notices will only be left up on the HGME website for one
year (until July 2010). Apologies for the inconvenience.

-------

I hope you are as excited about this new venture as I am and I hope you will
want to play a part in the HFME and the setting up of the HFME.

I hope you will help to spread the word about the HFME as much as you can.

Best wishes everyone,
Jodi Bassett
--
The Hummingbirds' Foundation
for Myalgic Encephalomyelitis:
www.hfme.org