The effort is just too great, the inboxes of each of my e-mail accounts groan with attention seeking missives; the bulk of these missives are ones that I once sought, groups and individuals with whom I wished to retain contact. Several of these on-line groups served as a real lifeline, at a time when I became predominantly housebound, a support network, at a time I had felt that my particular set of ailments were so unique no other human being could possibly understand.
After a while the politicking began to wear me down - each campaigning group so totally convinced that only their understanding was correct! At the same time, it seems so obvious that the combined might of pharmaceutical and insurance companies have a vested interest in retaining a psychological interpretation of a WHO recognized neurological condition. The powers that be preferred a meaningless waste basket definition, covering a multitude of disparate illnesses, rather than getting down to valuable necessary research into particular conditions. Any fatigue, it seemed, could be classed as chronic fatigue and any sufferer of chronic fatigue assigned a chronic fatigue syndrome tag. Strangely, although fatigue is not necessarily a significant symptom of ME, the two names became interchangeable.
Many sufferers seemed to follow a path of being initially diagnosed with some kind of depression, generally incorrect except in a re-active form, before a further diagnosis of PVFS (post viral fatigue syndrome) and later chronic fatigue was made, only occasionally being elevated(!) to the status of ME. There are so many tests applied that produce negative results and, it is frequently only by chance that one realizes that their own particular set of sudden onset (but protractedly lingering) symptoms coincide with one set of clinical guidelines for a specific diagnosis.
Anyway, all that's a bit of a digression, as some of the inbox filling messages are of specific political, tribal, literary, computing and blogosphere information. At certain times I've managed to keep on top of all these sundry communiques, diligently sifting out the wheat from the chaff but, over the past couple of months I've been so lacking of sufficient emotional stamina to even get beyond a skimming of the messages opening lines. The past couple of weeks some 60% of all incoming messages are ticked, marked as read, and deleted without even a passing glance from yours truly!
I once again seem to be suffering from some kind of acutely painful sensory overload, the crinkling of a plastic bag can prove sufficient to put the whole nervous system into shrieking cringe mode. Perhaps I'd overdone things by spending more than a couple of hours out of the house on two successive days.
Last Friday, after an early (a couple of hours before my usual emergence from bed time) dental appointment, I suggested to ma belle that we may as well do the grocery shopping as we were in the proximity of Waitrose. That evening was the Christmas Dinner at the Acorn Centre, where my beloved works as a volunteer tutor; I actually managed over two hours at that event before exhaustion overwhelmed me. The following day, after my familiar lie-in routine, went into town with ma belle and visited one or two shops where the odd purchase was made. We returned home for lunch before making a swift visit to an out-of-town retail park to collect a further item from my long-standing shopping wish list.
On return from the retail park we discovered that our DVD recorder had suddenly expired mid-recording of a programme, blaming the fault on the disc. Unsuccesfully attempted to feed the machine with other discs, each being declared "no-read", even the empty tray being declared a faulty disc or "no-read". I suspect the laser unit has gone on the blink. So, further exertion was then required from yours truly, to bring down our old twin tunered "terrestrial" VCR-DVD Recorder and a set-top digi box to enable the recording of "freeview" digi channels. The setting up of a jumble of scarts and aerials induced much panic fuelled perspiration. By this stage, the least audible or visual distraction in the living-room environment became quite overwhelming and a general sense of tetchiness took hold.
Last evening, around 9.00pm an overwhelming sense of exhaustion took over, followed by several emergency visits to the littlest room - amazing how much greater the output can seem than pertinent intake. Gastric upsets are nothing new in my experience but, most importantly an early night was called for. This morning, I emerged from snoozeville at 11.00am and, having donned back and ankle supports, walking-stick assisted, I ambled down to 'Open Church' for a cuppa. As they'd just run out of "real" coffee I settled for the instant variety. Before I'd even managed to finish the drink an excruciating sense of dis-ease overcame me as I shivered and shuddered whilst simultaneously perspiring. I attempted to leave but collapsed back onto the chair; a feeling of fear overcame me as nagging aches seemed to clog dance their way from shoulders to abdomen, to chest and sides. And then the tears flooded out before, David, Anne and Simon helped me into their car to drive me home.
Still in floods of tears, and non-specific bodily discomfort, I phoned ma belle at work to ask her to come home. There's nothing more important to me than the presence of Helen, whether I'm in high spirits or low, and the knowledge of her imminent arrival enabled me to feel a bit less fearful.
This post also appears on Mal's Murmurings