When Purgatory Beckons

I’ve always heard about the road to hell being paved with good intentions and, have more recently discovered that another’s good intention can bring severe dis-ease to the one being benefited by their deed. The past few weeks have not been easy for me to cope with, the aftermath of my minor stroke and that of my step-daughter’s accident, the latter needing my beloved’s assistance to dress and shower herself.

Over many years I learned to live both in communal houses and alone, much of the time at peace with myself. In more recent years I have lived in relative peace and harmony solely alongside my beloved OH. As I’ve mentioned before, since the onset of my chronic illness I have become increasingly tetchy, even over apparently trivial matters.

This morning my semi-invalided step-daughter suggested that the dust in our (that of mine and my OH) bedroom  was rather un-healthy and, decided with her one (currently) usable arm to take the vacuum cleaner upstairs to do the cleaning. You can only imagine, or maybe not, my dismay at being told, by a young lady who has four cats romping about in and out of all rooms, that our bedroom was unhealthy! I had already been made to feel guilty at my relative inactivity when a person with one arm immobilised, and purportedly in intense pain, could manage domestic duties of a kind which my physical and emotional stamina levels require that I ration.

The final hump-breaking straw was her decision to mop the floor using a pot pourri scented thick disinfectant, as a result of which I later had to struggle to regain my balance as I took a slipper shod slide across part of the bedroom floor! Fortunately that struggle ended successfully but, it was yet a further warning that a good deed, if ill considered, is certainly a step into purgatory.

TRYING TIMES

And suddenly I’m swamped, drowning in the muddy wastes of isolation. It’s not that I’m alone, nor am I not loved; the problem is the endless nagging of sundry aches and pains, the loss of contact with those I once considered friends as if it’s some kind of punishment for being exhaustingly unwell. Where once I was a social and political activist of a somewhat gregarious disposition, attending clubs, concerts, theatre, cinema, I’m now trying hard (although it often comes quite naturally) to be content with a lifestyle where all my entertainment has to be served at home, and campaigning becomes virtual via the internet.

I must admit to the blessings of TV, radio, CDs and mp3s but, they never fully compensate for the more participative experience of actually being present in the theatre, cinema, concert hall or jazz club. For much of the past ten years I’ve had neither sufficient stamina or confidence to think of attending / coping with the duration of a church service, although previously a regular attendee and house-group leader, especially if there’s a reasonably large congregation.

Much of the time I manage to accept these health imposed limitations without too much grieving, at others – such as today, a sense of frustration and despondency verges on despair. Perhaps the frustration really began when I didn’t feel really up to dining out with my beloved and her daughters; a sense of guilt swiftly ensued as I felt, albeit needlessly, that I was being anti-social. At times like this, I start to feel that I’m a burden on my beloved OH and family, although they reassure me that I’m not!

As I write my own report card the familiar words, “must try harder”, take on a marked significance. It’s so easy to be trying, even when it’s difficult to try.

wonderment and guilt - spontaneous jottings

A strange combination of wonderment and guilt are today's companions. Having allowed myself time to just sit, in the silence of the living room, looking out onto the garden, my mind is once again filled with the question, why is there something rather than nothing? Because there is something, imagining nothing (or a non/state of nothingness) seems impossible - I find myself watching the clouds slowly drift by and, I'm lost in wonder.

To be honest, most of my life these days is spent in some kind of wonderment and, it is because of (rather than in spite of) this appreciation of the wondrous awesomeness of life that I cannot avoid being committed to issues of social justice and hence politics. There must be an alternative to people being bogged down in the vicious cycle of wage slavery and debt; the world has a sufficiency of resources for everyone to be able to enjoy leisure time without being wearied and overburdened about how to acheive even a subsistence lifestyle.

But, you may well ask, where does the guilt enter the equation? It's that old protestant work ethic no doubt - how can I justify stting doing nothing rather than taking some positive action? The straight answer is that I don't need to justify it but, the guilt remains anyway, ignoring the logic of my answer.

Unrefreshed

Last night, I once again pursued a pattern of erratically intermittent unrefreshing sleep; the primary evidence that I slept at all is the vague memory of awaking from rather fraught dreams. Of course there’s always the possibility that the memory itself is a false one.

That old familiar sensation, of sharply bruised aching discomfort emanating from the armpits, returned with a vengeance and, I was forced to remove my (not overly tight fitting) pyjama jacket to escape a sense of torso choking strangulation – armpits replacing the neck as the constricted airway. At this stage even my PJ trousers seemed to become an instrument of torture, the groin area coming out in sympathy with the armpits, and so were duly removed.

Unfortunately, as a result of the restless night, I lacked sufficient stamina to attend the funeral / thanksgiving service for a friend of mine and I am struggling to prevent this non-attendance adding to that burden of guilt about which I wrote yesterday.

On a more positive note, my beloved is finally starting to show signs of recovery from the events of last Monday and was able to attend the service along with Beth.

The Guilt Thing rears its head!

Just wish I could get over this guilt thing, it's getting worse if anything! For health reasons the majority of my social and political campaigning is done online, rarely do I have sufficient stamina to get out to attend vigils and / or meetings and, each time I receive notification of such events the guilt intensifies. It's almost as if I feel guilty for having a chronic health condition.

Of course it was with a great sense of relief I attained state pension age in 2009; having been dependent upon receiving benefits, for which one had to crawl and squirm through prohibitive hoops and obstacles, for a few years prior to that (following on from a reasonably productive period of working life which started when I left school in 1960) it was refreshing to receive my pension entitlement without having to perform such degrading gymnastics.

My greatest pleasure is derived from the familiar environs of home and garden, managing to do a little painting and writing when physical and emotional stamina permit as well as taking photos and videos of the garden's flora and fauna*. Stamina levels are frequently sufficient to manage the cooking, a wonderful creative outlet, and I am also fortunate in being able to cope with infrequent brief visits into town and even, on occasion, enjoying a dining out experience.

I suppose the guilt has intensified over the last few days, when I have become more aware of my limitations whilst attempting to care for ma belle who has had a rather rough week health-wise. If she hadn't been so unwell, there's no way that I could have persuaded her that she wasn't fit enough to go to work, or attend a church executive meeting; her great ability is to push through the barriers of exhaustion in order that she should not let anybody down.

 Admittedly, there was a time when I could quite happily burn the candle at both ends, whereas I now find the same candle frequently splutters itself out whilst so much remains to be done.

Most recently, I'd really love to attend the midnight vigil, being held this Saturday at Menwith Hill (USA spy base) just a few miles from our home, to mark 20 years of conflict in Iraq (1991 - 2011). Recent days have found me in bed by half-past eight in the evening, emerging from the duvet lair some 14 or 15 hours later, so attendance at this vigil is far from being practicable.

An attempt at a minor task of DIY, erecting a small bracket on masonry in our new porch for a Solar Sensor Light, resulted in the most frustrating failure. If I can't even manage to drill and plug a couple of holes succesfully, even being wearily overwhelmed in the attempt, my presence at any event is unlikely to be felt or missed!

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* PS new visitors to our garden this week included Waxwings and Fieldfares - unfortunately both species proved a little camera shy (or maybe I was just too slow getting off my backside)!

Frustration Rules

A generalized sense of shatteredness has replaced much of the familiarly painful discomfort of the past few years yet, simultaneously, the tetchiness of my achingly disoriented days has returned with a vengeance. I suppose that, on one level, I feel rather guilty about not doing more with my time; after all, I have periods of a few hours on most days now when I feel totally alert but, even many of my e-mails remain either unread or superficially browsed through and my best intentions remain just that, intentions.

At least when pain was being experienced at excruciating levels I felt that was genuine reason for not getting off my backside and committing myself to some positive action or endeavour, manifest in either literary or painterly output. Currently, I find myself exhausted when I go to bed (at a time I once would have considered early), restless through a goodly portion of the night and, spasmodically sleeping through a goodly part of the morning, once I've discovered a suitably comfortable posture. It's rather strange being neither a night-owl nor an early riser; where once a few hours bed rest ensured an adequate energy resource, many hours of rest don't seem to leave me with much of an energy reserve at all.

Before anyone jumps in with a solution, I must emphasize that whenever I forego my lying-in period a totally mind-numbing, muscle bruising, fatigue overwhelms me before the day is out. Any self-enforced increase of exercise seems to have an intensely negative rebound effect on subsequent days.

Frustration rules!

Dichotomy - IAIYH

I've just had a Damascene conversion; I now realize that this ME thing is all in my head.

My head keeps telling me that I ought to be able to do things (after all six or seven years ago it was no problem!). Of course, my body tells me in a most excruciating manner that I'm not able to do those things. The head starts grieving for the limitations of the body, the restrictions on any socializing that I used to enjoy etc.; so I try to exert myself a little more, the effects a couple of days later are devastating.

There must be something wrong with my head, it has the false belief that I ought to be able to manage these things!

Suddenly the remembrance, from long ago days when I studied philosophy, you can't derive an "ought" from an "is". Then I knew that my head was wrong, it's just a bad philosopher. I may still have ME but, I'm not going to let my head make me feel guilty about it!

Slow Running

 

I doubt that it’s possible to resist this inbred protestant work ethic, and its consequent guilt trip. I’m the guy who, for many observers, seemed so laid back that, even when standing upright, my spine must have been around 45 degrees from the horizontal and yet, this gnawing guilt persistently upsets me.

For the past few years, for health reasons, I’ve been unable to undertake any employment paid or voluntary, each day being so unpredictable, presenting the unexpected obstacle or fresh hope; physical and emotional stamina rarely coincide even on the best of days. A major regret is that, when I was enjoying better health, I pushed myself that bit too far; my current ability to pace myself, to subsist on a lower altitude plateau, does not come easily.

A very good day for me, these days, means running at as high as 35% of what would have been a quite sluggish activity level for me a few short years ago, and yet, I’m still plagued by guilt. I ought to be doing more; forget the fact that taking a shower is frequently a daily task too far, cleaning my teeth an effort too much when exhaustion suddenly overtakes me, I should be doing more; I should be out there earning an honest living.

Of course the media, and politicians of all persuasions, almost daily attack anyone living on disability or incapacity benefits as degenerate scroungers. If only some of that vitriol could have been spared to attack the greed driven recklessness of the banking fraternity, or the many hours wasted (and billions of pounds lost to treasury) by those working out ever more devious tax-avoidance schemes for those who already have more income annually than most of us can expect to earn in a lifetime, our economy might now be in a far healthier state.

Perhaps in a few months time, when I chronologically comply with / qualify for the Old Age Pension, the “guilt” will flee from me. Somehow that could be the time for freeing up; it’s currently difficult to admit that I’m enjoying being a gentleman of leisure, whilst I so wish for the energy to be running in a far less leisurely mode.

'Tis better to arrive ... than having journeyed

After all the apprehension regarding a forthcoming journey, the whole experience is now behind me but, not without having once more vowed that I’ll never embark on such a venture again. Truth be told, the outward journey went reasonably smoothly as we journeyed via A1, M1, M42, M40, M25 & A24 from our abode to that of my brother on the South coast. The only little panic attack I suffered was during a break at Oxford Services; it was just so bustling with other travellers that it caused a bit of sensory overload on my part. Breathing exercises duly performed, I was soon ready to move on.

Shortly after we arrived, at our hosts, a delicious lasagne was appreciatively devoured by hosts and visitors alike. Food and wine throughout the visit was much appreciated. Both Helen and I were ready to retire au lit, during our stay, at an earlier hour than is our norm; the sea air seemed to be laced with knockout drops.

Of necessity, for me, life and the events / activities therein has always to be taken at a leisurely pace; I am far too well aware of the deleterious effects of overdoing it. Although I managed to do more during our weeks stay than would normally be my monthly quota, I found it impossible not to feel guilty when I couldn’t readily jump at the opportunity for further outings or activities. At times like that a sense of helplessness / hopelessness becomes overwhelming, until my beloved reminds me that a couple of years ago I wouldn’t have even been able to contemplate taking a trip anywhere; even routine visits to the hospital proved daunting at that time!

Visits to Littlehampton, the Wildfowl and Wetlands Trust at Arundel, and the Istanbul restaurant in Worthing were all experiences to be savoured but, the real highlight of our stay was a visit, on the Saturday, from my (nearly) four year old great-niece, with her Mum and Dad in tow. Apart from the delightful antics of Ruby herself, it was a real pleasure to see Dave and Jan in action as the doting grandparents.

The first panic attack of the return journey home occurred before I’d even got into the car and then, three loo stops were required before we’d even arrived at the M25. To my surprise, the journey went smoothly as soon as the major motorway part of our route was underway. No matter how much one may have enjoyed their stay away, there’s nothing quite matches that feeling of exhilaration at arriving home. I appreciate home at any time but, each return there (from whatever locale) is just the greatest feeling imaginable. For me, familiarity breeds content!

Jaded Guilt

A rather jaded Mal has just posted 'The Guilt Game' on his Murmurings.

Mal Murmurs towards the positive

Although starting from greyness, yours truly has decided to Accentuate the Positive on 'Mal's Murmurings'.

Accounting For My Time

Until yesterdays brief posting, I’d been feeling rather guilty about the paucity of recent blog posts. It’s not been a case of having nothing to say but rather not having the time to say it; other activities decided to prioritize themselves.

So, what has been happening? Not a lot but, far too much. My pacing has at times managed to go awry; it still catches me unawares when a couple of hours pottering around in the garden results in the following couple of days being plagued with an achingly painful fatigue, a kind of hollow bruised feeling encapsulating my whole being.

A recent visit to the doctor found my GP, half jokingly, asking my other half why she doesn’t stop me! It’s rather as if the hare asked the tortoise to slow down. Problem is, there’s no telling when an adrenaline high is going to push one beyond the parameters of their proper pacing and, frequently it will be at such a time that my beloved’s out at work. When one attains or achieves a certain goal, they feel so chuffed about it that they begin to feel indefatigable.

Following that particular visit to the surgery I was sent up to the hospital for a full battery of blood tests from which only one reading (an adjunct to the ‘normal’ thyroid function test) showed anything abnormal but, not alarmingly so. The locum doctor (with whom I’d discussed the results) said, “just as you’ve seen a little progress this year, in managing the ME/CFS, perhaps you’ll see an equivalent improvement over the next three and a half years”!

It’s a slow journey but, I continue to live in hope.

*****

Apart from the aforementioned work in the garden, the primary consumer of my time has been of the computing variety; re-vamping websites, setting up an online print store and attempting (eventually successful) to troubleshoot sundry laptop problems. As an older laptop is now totally defunct, I decided to install its XP Pro OS onto another machine, hitherto running XP Home, which led to me having to re-install devices and drivers prior to replacing various software programmes. This exercise even had me starting my day earlier than has been the norm; the excitement and uncertainties encountered during the overall operation fought off the brains desire to rest, the mind buzzing overtime when I should have been sleeping.

Subsequent days saw my customary 10 ½ hours of bed rest extended to at least 12 hours, choice didn’t enter the equation!

*****

Model helicopter flying, and repairing, has only occupied a small amount of my time; my reserves of concentration are not sufficient to permit more than the occasional brief practise episode.

A surprise ‘phone call, shortly before I was due to emerge from my duvet lair last Friday, led to a rather thorough investigation of matters, religious, theological and philosophical, as well as personal, in what for me was a prolonged telephonic dialogue (approximately 1 hour duration). The excitement, of this somewhat exploratory conversation, somehow pushed my tiredness onto the backburner only to return with a vengeance later in the day.

By the evening, my mind was once more buzzing, theological ideas spewing forth like there was no tomorrow. Ideas for a little theological exposition abound, it’s quite simply (!) a question of organizing my time and stamina reserves; don’t hold your breath though, a little preliminary work involves clarifying the confusion between/about ‘values’ and ‘truth’ and the anachronistic approach of biblical literalists.

Personally Political

Another day of bright sunshine; after all the recent weeks of downpour, each bright day feels like a privileged bonus. Problem is, I can’t really tolerate very warm conditions but, at least it deters me from risking overdoing things. Even my time sat beside the pond is reduced to a maximum of half-an-hour but, that’s time enough to notice all the little areas of the garden that need a bit of tidying up. It’s a hard discipline to prevent oneself from jumping up and getting to work with fork, spade and secateurs although, I have gradually learnt to deal with the guilt of sitting idly by.

When I was able to both work and play hard there didn’t seem to be a problem with ‘chilling out’ but, when one’s health prevents one from having a ‘regular’ job (or indeed doing too much socializing), it’s truly amazing how much guilt is promoted from ‘necessary’ inactivity. Quite strangely, if the lack of activity was from choice guilt wouldn’t even enter into the equation; it would simply be a lifestyle choice. Unfortunately, being raised so deeply entrenched in the protestant work ethic, idleness seems almost to be a violation of societal values.

I don’t want this to sound self-pitying, my life is predominantly a joyful one (a myriad of discomforting ailments notwithstanding) revelling in a catholicity of interests artistically, theologically and philosophically. I also have the privilege of being able to enjoy such simple pleasures as observing the piscine activity in both our garden pond and aquarium, watching the birds and butterflies in the garden and, most importantly, being loved by (and loving) ma belle Helen.

What prompted this self-examination was a comment submitted to the Jeremy Vine programme (BBC Radio 2) saying that “all the ‘poor’ needed to do was get off their backsides and get a job”. The appalling ignorance of such statements made me cringe; my immediate thought was of the Auschwitz motto “ARBEIT MACH FREI”; what a joyous freedom those victims of forced labour enjoyed! Some of the hardest working people I have ever met (or known of) are still, thanks to the appalling inequities of the labour market, caught in the poverty trap.

At a time when I worked for a local authority, in response to a question concerning better salaries or promotion as a result of people attaining their goals in the National Vocational Qualification scheme, the well paid spokesperson (for Investors In People, I believe) had the gall to respond to the effect that, it was to enable them to get more satisfaction whilst retaining their same status. So much for social mobility!

For myself, I was fortunate in having job satisfaction in an underpaid position; I did in fact move on to a lower paid position elsewhere, on the straightforward grounds that it was a necessary and rewarding position. Money has never been a major motivating force for me but, I cannot escape the feeling that the venture capitalists are the most voracious parasites in the developed world, making their fortune at the expense of the poorest members of society.

Tetchy & Guilty

Today, I seem to be a really tetchy sod but, I suppose, bearing in mind last night’s restlessness, it’s only to be expected. Things rather came to a head when, nearly three hours after my beloved went out, for an Indian Head Massage, she still hadn’t returned home and, all sort of worries started to dominate my thoughts. Decided to ‘phone her but, her mobile was switched off so, come 5.25pm I ventured out for some nicotine sticks. Having purchased the comforters, a lady from the church I used to attend (in those dim-distant days when I could cope with such social events) enquired as to how I was. My response, “not brilliant”, was snapped out in a rather off-hand manner and, I couldn’t be bothered to hang around to amplify or apologize for my curtness. Of course, the normal social understanding of such enquiries is that the enquirer doesn’t really want to know!

By the time I got back in the house I started to feel guilty for being so rude. Forgot to mention, I encountered my beloved whilst on my way to the shop and my ‘greeting’ was rather sharp … a result of concern and frustration … so; I suppose an enquiry as to my health was the proverbial final straw!

Now, I begin to feel guilty because I don’t feel at all well! Perhaps it’s no point waiting for the effects of my most recent acupuncture session to ‘kick-in’ and, I should accept that, on this occasion, the effect is purely negative.

Don't Bring Me Down ... I Can Do It By Myself

Lying in bed this morning, I was surprised to hear my local parliamentary constituency referred to in the news bulletin on BBC national radio. It was simply a reference to Tory deception attempts with reference to our local health authority. I suppose anyone remembering the Thatcher era, and Howard the Thought Vampire's role in it, realize that dirty tricks will be needed as Blair's Crew have stolen most of the Iron Lady's clothes.

Anyway, I didn't let this get me down but remained on my contentment plateau. Should have known it was too good to last and, the fall ocurred mid to late afternoon. The prompt for this decline, that the pond pump had once again ceased-up; reset the trip switch to no avail so obviously more drastic measures are called for. Retrieved pump from its position in the pond, removed the clip and casing and cleaned it down with a hose to remove algae residues etc. Switched the pump back on and immediately a trickle of water flowed but, this trailed away to nothingness within a very short time. The trip-switch constantly tripped ... suppose that's what they're for ... but why. The pump itself is new this season but we never had this problem with the trip switch on the old pump; it did start tripping slightly more after some "handymen" altered the siting of the said switch but it didn't help simply to curse them.

For some reason I let this little episode bring me down. I suppose I've just got to admit I'm not as well as I'd like to be, now let's see .....

Proton-pump inhibitors are performing quite well but, the rhinitis treatment seems to have gone in reverse, anti-depressants ...?; my throat still has the same problem although I understood it was supposed to improve as I stopped regurgitating acid! Exhaustion factor; on this front the last couple have days have seen a slight improvement.

I'm even starting to feel guilty about not feeling well; suppose I should become a Tory, as in my view they're all sick, I should at least feel at home amongst them!

Faith, Guilt and Weakness

No matter how exhausted, angry, b....y belligerent I become, Faith somehow oozes its way into my consciousness and then the dose of guilt re-gurgitates itself! I am fortunate, I am loved and accepted by those who are important to me and, able to love some of those who are not of any significance to my sense of well being. To love in the abstract is easy but, especially with my current health-imposed intolerances, the practice falls far behind.

I am important in so far as every individual is important, my self-esteem is at times a little too good and blinds me to the accidental inadequacies of others. Setting high standards for myself and falling short, it is sometimes hard to recognise that a lot of the ignorant beings we encounter in daily life can't help themselves .... their rudeness always seems to bring out the worst in me.

Self-pity, at not being able to curb the more negative emotions, tends to make me feel like a liability to those I care for and who care about me. The circle rolls on and ultimately I cannot nor do I want to let go of my concern for the underdog, the neglected! Therein lies the saving grace .... it cuts short the introverted pity and, once again, restores to me the awareness of just how fortunate I am.

Faith is the guilt that salves itself!

The Veneer Cracks

My emotions are extremely close to the surface today, anger and tears most closely aligned. Tactless persons trying to push their merchandise in one's own time and space [see ALIEN INTRUSIONS], inept workmen (of whom we've had a surfeit in recent months), and coping with and supporting others with problems, do not always sit well alongside my post-viral depressive condition!

The protestant work ethic has a lot to answer for too! I constantly feel guilty that I am unable to tackle many little tasks, both around the house and elsewhere; sometimes its the spirit but more often the flesh that proves unwilling!

Currently, I'm sat in front of the computer, awaiting a call from the Doctors Surgery, having realised I am perhaps even less well than I thought I knew!