Sunday, October 26, 2014


Strange how putting the clock back an hour can make one feel capable of regaining time; if only! To be honest though, it’s the very fleetingness of time that I’m still struggling to come to terms with.

As a child it feels as if the next summer holiday, Christmas Day, or even the weekend, can’t ever come soon enough. Confined to the schoolroom, the hours of each day hang leadenly as you watch real life going on at the other side of the window. Mind you this slower passage of time also provided greatly extended hours of play, leaving one exhausted long before the day was done.

These days, after a long night’s unrefreshing sleep and restlessness, that state of exhaustion seems to accompany almost any small task; perhaps it’s not really exhaustion but rather an aching void replacing that illusive space where stamina reserves should be accumulated.

When one’s sundry aches and pains are playing neurological havoc it’s easier to understand the lack of stamina but, this physically aching void doesn’t even seem to require these more tangible ailments. Mind you the IBS, diverticular disease, rhinitis etc; are always lurking just below the surface.

The lower my stamina reserves, the tetchier I become and, whatever reserves are there explode in bursts of angry expletives. I don’t deny that I’ve always had a bit of a temper, the outbursts often justifiable on socio-political grounds, but the frequency of expletives in my occasional outbursts seems to have grown exponentially. Anger stems from frustration, frustration from limitations on both physical and emotional stamina.The truly ridiculous thing is that these outbursts leave me feeling more drained.

Although these aching voids can sometimes feel like an eternal punishment, days (and even years) have passed by so swiftly, as if to emphasize the weight of spiritually / emotionally good days I must be having. Any day spent with my beloved is wonderfully worthwhile, even if I’m not always the best of company.

So little time, and so much I want or intend to do. I’ve put the clocks back but, sadly, I cannot put back time.

Tuesday, October 07, 2014

living moderately

Well hello again! I’m not sure whether its weeks or months since I last proffered a “proper” blog post and, I must admit that the prospect seems rather daunting. No excuses, there’ve been good times and bad times, rough days and smooth days, since my last full offering and my stamina reserves have been used on other pursuits.

Upturns are represented by my casting aside the walking stick on several occasions, managing a moderately brisk walk of several hundred yards, whilst still lamenting an inability to manage a few miles. Some people are never satisfied!

I still enjoy our garden, no matter what the season, albeit from a passive observational perspective; what would we do without the professional services of our friend Martyn? Although I sometimes pride myself on my pacing, I still find myself suffering the payback penalty when enthusiasm for a modest task leads to even a modicum of over-exertion.

The usual problem is recognizing the exertion that may be demanded to fulfil an apparently simple undemanding task. One such example was a recent successful attempt at re-potting a contorted hazel shrub. Initial preparation of the new container went smoothly but, once I’d placed the plant in situ, the task of infilling turned out to be the proverbial straw. Brain fog, an amplification of all my familiar sundry aches and pains (muscular, joints, lymph nodes, abdominal spasms etc) and an inability to control my legs as I headed back to the house – a kind of conscious restless leg syndrome! The next couple of days passed in an achingly painful, mentally hazy, sense of being; it took a little more time before a tingling sensation of being trapped in an undersized skin receded.

It’s a few weeks now since my beloved retired from her salaried employment, at the doctors surgery, so I’m really enjoying more of her company. Mind you, she’s still meaningfully occupied as a local preacher, an assistant on computers at the Acorn Centre, Fair Trade issues and involvement with the local Labour Party.

 Until recently it has been somewhat difficult to persuade her to take much needed recuperative rest. Having always pushed myself, working and playing hard, prior (and probably causally related) to succumbing to ME, I do worry that some people ill-advisedly over exert themselves rather than listening to their bodies and ensuring they always have some stamina in reserve.


Encountering ME - a selection of poems, reflecting my experience of living with moderate ME can be read online or available as a free download from Scribd.

Mal’s ME Jottings – a selection of blog posts are also available on Scribd – read online or available as a free download.