hirsutemal

Sometimes the mind just wanders. A time when one should, by rights, be fast asleep is the oddest of hours to embark on these travels.

Disappointment this lunchtime, when we decided to amble across to the local ‘Crepes & Crocs’ bistro at ‘The Milepost’, at least the stroll there was eventful as we were stopped to be interviewed for Sky News about the postal strike, only to discover a total change of menu. No more crepes or crocs, nor any of the exciting menu previously proffered; instead we’re presented with a menu offering the usual boring pub food repertoire.

Unfortunately, we’d already ordered our drinks before viewing the menu thus holding up our departure by a few minutes, whilst I consumed an excellent pint of malty “Hobgoblin”. No complaints about the beverage, just the menu, the sole reason for our being there. Upside of the visit; the chippy opposite the pub was open so we took away fish and chips for two at less than the price of one serving at the pub. Why pay double the price for the privilege of sitting at a table in an otherwise deserted hostelry; the reason for the menu change was “lack of demand” yet, this is the first time we’ve visited when there were no other dining customers and, they even lost these two potential diners into the bargain.

There’s no point dining out if all you’re going to offered is the usual ten-a-penny pub grub!

How I ever found time to go out to work is a mystery to me.

Time simply races by and, my best laid plans frequently fail to come to fruition owing to an insufficiency of waking hours in the day. No doubt some of this is due to my lack of stamina, not so drastically reduced as it was a few years ago but, stamina levels are nowhere near those I took for granted before succumbing to M.E. in 2003. Mind you, the M.E. put paid to my ability to work and, even prevented me from venturing more than a few yards from my own front door for a considerable period of time.

Reaching retirement age, and eligibility for the State Pension, seemed to produce an energy surge for me, elated by the experience of being free from the guilt that all incapacitated people are forced to feel when they have to resort to “benefits”. Politicians and media all paint a picture of tens of thousands of people in receipt of benefits being lazy scroungers but, the reality I experienced was one of enforced degradation in the way one was treated by the DWP and its medical agents; hard work at a time when ones physical and emotional stamina reserves are at an all time low, to say nothing of the excruciating pain and general dis-orientation.

Sorry I’m getting sidetracked, in any case that stamina surge, referred to at the beginning of the previous paragraph, didn’t last for long. Perhaps the initial mystery (opening sentence refers) only refers to people in less than prime health. I am extremely fortunate in that, shortly before becoming incapacitated, I’d had my arm twisted to go on t’internet. Being on-line proved a lifeline; unable to participate in the socializing, which had up that point been a mainstay of my being, I discovered the value of cyber friends who proved more loyal than some of the real world ones once my illness struck. Eventually, I found myself totally absorbed in this alternative world, barely a day could go by, physical and emotional stamina permitting, without at least a couple of hours “surfing”. Another advantage of surfing was the availability of bite size gobbets of information, on sundry topics, which fell within my concentration span; formerly an avid reader, the illness had taken away my ability to concentrate for any sustained period – measured in minutes rather than the previous hours.

Having once been an enthusiastic amateur photographer, the advent of affordable digital photography was another lifeline; no more worries about the cost of films and processing, I could now snap away to my hearts content both in the house and the garden and, swiftly edit the results. Hard copy prints were no longer of any great importance, the creativity was all.

Throughout this period, as stamina reserves fluctuatingly improved, I was able to allow the artistic muse back into my life and, on occasion was able to wrestle a new poem or painting into life. In more recent times, an increasing amount of time has been spent in the garden, generally pottering about and developing the wildlife garden end.

Painting, writing, photography, gardening, and even a bit of cooking, each makes its own demands on one’s time. I really don’t know how I ever found time to fit in any formal employment.

Today is another wonderful unique day. The question is, do I feel better because of my attitude or, is my attitude different because I'm feeling better? I suspect that without the latter it would be virtually impossible to activate the former; mind over matter can only go a small way. For more than 90% of the time my outlook is positive, it's only reality that gets in the way and causes me to stumble.

This morning I sat in the shower and positively wallowed in the experience. A short while later I decided to venture down to 'Open Church', for coffee and a chat and, guess what; as i walked down the road one leg moved in front of the other in a seemingly effortless manner. It's an amazing thing this walking business, enabling one to get from point A to point B whilst, simultaneously, breathing in the air!

Breathing, that's another little miracle, inhale a complex of elements and exhale those not required; it seems like you get rid of all the crap with the minimum of conscious input. The whole process of walking and breathing feels like something worthy of celebration rather than being taken for granted. Having experienced some days when the necessary effort of taking a deep breath becomes a rather irksome task and, the movement of lower limbs causes considerable discomfort, makes it much easier to appreciate how wonderful a state of (relatively) healthy normality really is.

Walking down the road, reciprocating smiles with unknown passers-by, can be such a joyous experience.

SPIKE

Daylight confusion reigns,

the creature fails

to separate diurnal from nocturnal rules.

One easily discerns

something’s amiss

but has no ready answer  

to the hedgehogs plight.

Find a nice box, line it

with newsprint, hay and towels

for the bewildered traveller,

leave it a snack

to nibble on. Come morning

the food has gone,

a coil of spines

heaves sleeping breaths

amongst the packaging.

I compliment myself

on job well done. Later,

the sun has reached it’s powering height,

the creature ventures out

and dozes on the sun-drenched lawn –

I move the spiky one

back into sheltered snuggling warmth

where he remains this time

but never roams again.

                                        Malcolm Evison

                                         12 August 2009

It’s more difficult than you’d imagine to listen to one’s body. When things are going well, as has been the case for the past few months, with a paucity of trigger alarm signals, one becomes blissfully unaware of their own limitations. Managing a bit more here, and a bit more there, the extra effort seemed as if there were no toll to pay; the boundaries of my physical and mental effort have extended dramatically, way beyond what would have been my wildest dream during most hours, days, weeks and months from late 2003 to early 2009.

One takes the occasional trivial setback in their stride so, it came as something of a shock, this morning, when my head, torso and limbs were all suffering from several of the symptoms and sensations that so frequently blighted my being during that earlier period. Thankfully, they were only present as a pale reflection of their former intensity; even that was sufficient to prevent me continuing a leisurely stroll, on which I’d embarked mid-morning, to ‘Open Church’. That’s when I realized that I’d been losing the knack of ‘listening’ to my body, overdoing things a bit in my complacency. It’s almost as if I’d become too positive in my outlook; mind you, if positive thoughts had been a “cure” for ME-CFS I wouldn’t have ever succumbed in the first place.

So, it has been a lazy day for me, enhanced by listening to a new CD, ‘Tortured Soul’ by Danelle Harvey; the lady in turn rocks, grooves and tenderly coaxes her own words into life in these songs. Although the title of the album, and indeed the subject matter of some of the songs, could lead one to expect a ‘downer’, it’s the artist’s vitality and resilience that shines through.

Not only have I been taking stock, renewing my vigilance, when it comes to listening to my own body, I’ve also had the pleasure of listening to an inspiring singer / songwriter.

Saturday evening is usually my major cooking time, when I prepare the meal for Sunday lunch-time, which usually also suffices for our needs on the Monday and, in variant form provides the main component of a further meal later in the week. This Saturday proved an exception, to the normal routine, as I was too achingly exhausted to attend to such matters.

Helen’s birthday, highly dissatisfied with it’s very limited database and the temperamental software which made it nigh impossible to succesfully download and install an essential update.

Over the course of the past few weeks, great steps forward have been achieved! What I would have considered minute shuffles, in pre-illness times, now seem like immense strides in terms of progress. Increased activity levels have been only moderately counterbalanced by achingly exhausted collapses; the all too familiar roller coaster experience has been transformed into little more than a kiddies replica of the real thing.