ME/CFS - Challenges of daily living

"Christine Milner is one of 250,000 in the UK who suffers from chronic fatigue, or ME. Here she gives a personal insight into what her life is like.

You wake up in the morning with a pounding head, aching from head to foot.

Your arms and legs feel like lead, your brain seems stuffed with cotton wool.

You console yourself with the thought that by this time next week you'll feel better.

Except you don't. No medication makes any difference to the way you feel, and over the coming weeks and months various doctors and well-meaning friends encourage you to "just do a bit more each day", even though you have as little energy and as much pain as you did that first day."

This is the beginning of an excellent article on living with ME/CFS - the full article can be found in the Yorkshire Post of 04 March 2009 ... Learning to live with challenges of chronic fatigue one day at at a time

Salt Flow

Just when things can’t get any worse, somehow they manage it; Wednesday’s crash (KERRR ..AAAA…SSSH!) was followed by an even greater slump on Thursday. Serially interrupted sleep seems to do little for one’s morale or physical well-being; the emotions make an overt display, this time in the form of tears, not just the odd sob but torrents of salty liquid.

At times weeping can feel quite therapeutic, a sense of having freed ones-self of a deep rooted, repressed, aching frustration but, just as I began to feel more secure, the least little incident opened the floodgates once more (e.g. an inability to accept a phone call). This time I feel that there’s more than a hint of depression to the frustration, and yet in my daily routine I feel that (subject to omnipresent limitations) I have a most positive relationship with the universe. That recent sense of dis-ease with which I occupy my own skin is the only alienating factor – objectively I (subjectively) love life, and everything it throws at me, challenges and pleasures each finding a fit place; all that’s really required is a healthier bearer (body) of my bundle of sensations.

That’s the really odd thing about depression, it bears little resemblance to self-pitying sadness; no matter how much one tries to rationalize this cloud (as to its cause) one is never able to get to the core of the matter. Much of the time I’m completely unaware of its lurking presence.

One is depressed in spite of ones-self, not because of!

Sinna's Kerrr...aaa...sssh!

A sequel to yesterday's 'Transitional Demands' posting can be found on Mal's Murmurings - Go to KERRR ..AAAA…SSSH! - I suspect that the title suggests a lot!

Transitional Demands

What a pleasant surprise; I’ve just been counting the cost and it isn’t half as costly as I’d anticipated; admittedly, sometimes the price is paid later. As a parallel to climbing the property ladder, if one takes too many risks with their “pacing” they have to be prepared for landing up in negative equity. I’ve recently been trying to extend the boundaries of my pacing regime, how else am I going to know what I can manage but, at the same time, I’m listening to the signals my body transmits back to me.

We’ve recently decided on a course of revamping our bedroom, which requires a little shunting around, and spasmodic removal of, the extant furnishings and accumulated detritus. Yesterday was the time to assemble a couple of wardrobes, a task which at first seemed rather daunting, though it proved rewarding as one managed to satisfactorily assemble the said units (despite the manufacturers best endeavours to ensure the misalignment of certain component parts). It proved a rather perspirational endeavour, during which I several times struggled to ignore both pain and stamina thresholds before finally collapsing at the eleventh hour; not a moment too soon. Our friend John, who lives just down the road and had earlier proffered assistance, arrived on his white charger to finish off the task in hand.

An early night being required, by body and spirit, there followed a somewhat restless sedimentation of hours, exhaustion seemingly serving as a barrier to sleep. After 13 ½ hours of bed rest(lessness), aching joints, bones and muscles were hardly in any worse shape than has been the norm over recent months / years, and the brain seemed to be functioning as well as can be expected. A slow emergence into the daytime world was par for the course; sleep eventually caught up with me, early in the afternoon, as I listened (!) to Radio 4 with hands crampingly poised on my laptop keyboard.

For little signs of progress I give thanks but, I am intentionally avoiding any further exertion today, a fair reward for yesterday’s endeavour.

10 Ways to Kill Fatah - Uri Avnery

"Contrary to the demonic image that Israel constructed for him, Arafat was the ideal partner. He was a strong leader and all sections of the Palestinian public accepted his authority completely – including those who criticized him, even including Hamas. He had the two attributes essential for making peace: the will to achieve it and the ability to convince his own people to accept it.

But, strangely enough, our government moved in the very opposite direction. The peace negotiations did not even start. The settlement drive continued unabated. Everywhere in the West Bank one could see the red tile roofs of the settlers springing up. The absolutely essential passage between the West Bank and the Gaza Strip was not opened – in spite of the solemn undertaking of the Israeli government to open four “safe passages”. Not only did the economic situation of the Palestinians not improve, but on the contrary, it worsened perceptibly. Before Oslo, Palestinians could move freely in the whole of the country (including Israel proper). After Oslo, that freedom of movement was restricted more and more." -

Uri Avnery

10 Ways to Kill Fatah can be found at :

http://zope.gush-shalom.org/home/en/channels/avnery/1235859721/

Find out how Malcolm enjoys A PRIVILEGED LIFE! [ The link is to a posting on MAL's MURMURINGS]

Through the night ....

Some days, the body just doesn’t belong to the skin which encapsulates it. No matter what the elasticity may be, there’s quite simply too much flesh to quietly co-exist within these restraints. To be honest, in my case, this experience of existential (and probably somatoform) disease and despair is more likely to occur at night time, when total exhaustion overwhelms the necessity of sleep.

Last night was a case in point; having already been shattered earlier in the day, my recumbent body alternating between disparagingly cold shivers and shudders and clammy overheated perspiration. More about the, most enjoyable, day’s preceding events later**; suffice it to say, some couple of hours before the witching one, I was already in a sufficiently somnolent state to anticipate a solid night’s sleep. Unfortunately, my whole psychosomatic being chose to rebel against nature’s course.

Everything was fine as my beloved snuggled up but, inevitably, there came a time to turn over and, this led to the discomfort switch flicking itself to the ‘on’ position. Left side, right-side, back-side, front-side; none of these postures bore any resemblance to comfort in any manner. Hands under the pillow, between pillows, pillows propped up; none of these proved the necessary perquisite for slumber. But the searing aches were worst of all; starting from shoulders, hips and ankles, these debilitating arrows swiftly became all pervasive.

Each slight movement led to a nauseating tearing of the armpits and the groin; disrobing was definitely the order of the night, pyjama tops and bottoms were swiftly discarded but, it still felt as if, at each susceptible body juncture, these discarded robes were tearing into the flesh. The accompanying sense of nausea, caused in no small part by the post-nasal drip, my all too persistent companion did little to alleviate my overall sense of distress. It was quite impossible to hold back the gut-wrenching screams emanating from somewhere deep within my psyche.

Visits to the bathroom, and occasional dressing gown bedecked ambling saunters around the room, served little purpose other than to relieve the bruising monotony of simply lying there in the hope that sleep would soon befall.

A few years back, similar nocturnal discomforts were par for the course; it’s strange the alarm that their excruciating return causes. Come morning, the longed for sleep (and relaxation) arrived and I’ve just managed to raise myself from the duvet lair at 1.15PM. And I’m here to tell the tale.

**************

**PS (21/02/09 - 8.28PM) unfortunately I've been lacking the necessary stamina or resolve to fulfil this prediction: a very worthy report can be found on my beloved's blog 'Bright Light' - "Our Wedding Anniversary - Part One" and "Our Wedding Anniversary - Aftermath"

Former MI5 boss Stella Rimington accuses government of exploiting terrorism fear | UK news | guardian.co.uk

Now, isn’t this a surprise! !!!!!!!!!!

Former MI5 boss Stella Rimington accuses government of exploiting terrorism fear | UK news | guardian.co.uk

COLONIAL REVOLT …? ..? ..?

I somehow found myself rather disappointed by this evening’s episode (6/8) of “Christianity: A History” (Channel 4), whose premise (according to Radio Times) purported to be:

“the revolution in which the peoples of Africa, Asia and Latin America seized the religion of their former colonial masters …. and are now set to overturn the established Christian world”.

To my surprise, given this premise, there was not even a passing reference to Liberation Theology in any of its manifestations.

We were treated to well worn stories of how Catholicism, in Latin America, was forced to allow the indigenous people to adapt the faith to their own traditions; (the whole history of Christianity’s expansion in the West, perhaps even before the Constantinian usurpation, has been one of adapting to societal and traditional mores). Eventually we came to the threat of splitting the Anglican Communion because the African nations attack such western liberalism as women priests and attitudes towards homosexuality. What kind of “revolution” sets out to turn the clock back on Christian inclusiveness; why, in this context, no mention of parts of the African church, in a completely reactionary manner, condoning and even conniving in the harsh persecution of homosexuals.

All too frequently we were treated to scenes of African Pentecostal fervour, with not the merest hint that contemporary Pentecostalism has also been a trend in many W.A.S.P (and even R.C.) churches, as well as those in the developing world.

Where, may I ask, is the revolutionary transformation?

**********************************

My posting on 'Mal's Murmurings', Gentle Changes, is on a more domestic theme.

Playing it safe?????

Two items, along the same lines, caught my attention today (one in the New York Times, the other the Washington Post); I must admit that one side of me wonders if the (capitalist)system is worth bailing out whilst, at the same time, it should be obvious to anyone that without some kind of bailing out action such vast numbers of innocent people are going to suffer!


"And the argument that our culture won’t stand for nationalization — well, our culture isn’t too friendly towards bank bailouts of any kind. Yet those bailouts are necessary; and even in America they may be more palatable if taxpayers at least get to throw the bums out." - Paul Krugman : Obama on nationalization

"Geithner did not want the administration to seem leftist, so he rejected the temporary nationalization of the bad banks. Yet the advantage of nationalization is that it's straightforward: The government would take over the bad banks -- as opposed to throwing endless sums of money at them -- clean them up, and sell them off." - E.J.Dionne Jr.:Lost in the Middle