The Art of Revival

Last evening, after a day of acute discomfort, I set myself a task by way of a distraction from my ailments. An old laptop of mine had become frustratingly sluggish, to a point where it seemed to have discovered the secret of backwards time travel; a simple update of MSE antivirus took on the proportions of installing a new service pack (and that in an imagined scenario when one had failed to install any intermediate patches). So, you may well be thinking, you utilized frustration as a distraction?



The mission this time was to do a clean install of XP Home SP2 followed by SP3, a few drivers needing to be installed in the process. I even managed to install a full Office Pro system, ready for handing the machine over to one of Helen’s students at the Acorn Centre. Having done all this work, it was amazing to see how fast it responded to any command – almost like new; the fact that many of the letters had worn off the keyboard soon allayed any confusion on this point.


The distraction did little to alleviate my painful discomfort but, I feel certain that the time passed much more quickly (and constructively) than it would otherwise have done. I’ve even got another discarded PC in my sights, to attempt another resuscitation operation.

Of LIMITATIONS and ENJOYMENT

OF LIMITATIONS and ENJOYMENT

Middle of the night and nature called; an attempted leap out of bed became the more familiar slowly lumbering self removal only, this time, with added difficulties. For the past two or three days the back pains had all but disappeared, only the more regular  discomfort remaining in its stead but, now it seems to have returned with a vengeance. It’s strange how one’s own body delights in playing tricks; just when you think it safe, to carry out an effort of moderate exertion, it sends out a disconcerting alarm signal. If only that signal was as transient as that of an alarm clock, disappearing as soon as one taps the necessary button, there would not be a problem but, unfortunately, these signals are not of that peremptory nature which curtails one’s pursuit of the (unwittingly) harmful course of action. These signals always seem to arrive after the harm has been done, swiftly transmuting the alarm call into a sustained aggravation.

So, you may well wonder, what transgression had I committed against my ailing torso? All I’d been doing was carrying out a partial filter and water change in our largest aquarium, changing two of the filter pads and performing a less than 20% water change. I could (almost) swear that I carefully controlled my posture during the entire operation, to minimize the risk of detrimental health effects, but my body makes a different declaration.

Prior to that minor operation I’d made a visit, with my beloved chauffeuse, to the local aquarists to replenish necessary supplies. The journey is approximately 2 ½ miles but, as is becoming an increasingly common experience, it felt like a major expedition; even travelling at speeds which never exceed the legal limit, on primarily suburban roads, can seem  like  we’re exceeding Mach 1 – my body  crying out in reaction to the velocity at which we’re hurtling through space. 

The whole sensory overload experience seems once again, and most regrettably, to be edging its way into taking control of my lived experience. I’m just hoping and praying that I won’t tumble once again into that convulsively shattering realm.

Strange as it may seem, apart from the sundry ailments which posit substantial limitations on my activities, I do continue to enjoy life. The simple pleasure of observing, and encouraging, the flora and fauna of our garden is a wonderful joy bringer, second only to the presence of my beloved. As I’m no longer able to cope with cinema or theatre-going, the increasingly wide range of films available on DVD proves a real blessing. My enjoyment of cooking, provided a fair range of herbs and spices are to hand, is another source of pleasure, as is the consumption of the end product! I must admit that much of the time I don’t really feel unwell, sundry muscular and glandular aches and spasms have quite simply become an accepted component of normality; it’s only when i attempt to stretch my activity output that I’m quite forcefully reminded of my limitations.

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in case you missed yesterday's frivolous posting on 'Mal's Murmurings' I've repeated it here :

A Nation’s Addiction?

A radio news bulletin informs me that we’re becoming a nation of TV addicts, adding “according to a survey of viewers“!

They should try surveying non-viewers, only to discover that nobody ever watches TV in the UK!

 

Mal's M E jottings on New L4S

Apologies for the recent paucity of postings but, at least I've managed to find the stamina to add a new section, "Jottings from Mal's M.E. Log", to our 'New Luv4Sinners Website'

More on 'Mal's Factory'

I have just posted 'A Poem to Secular Jesus', both text and video, to my Mal's Factory weblog

As one door opens ...

Just as one ailment is alleviated another seems to posit itself in the full spotlight of my attention.



It is with a great deal of relief that I can report on the effective suppression of the most disconcerting symptoms of GORD, the combination of esomeprazole and domperidone most definitely curbing the most acute intestinal and oesophageal rebellion. Doses of a moderately potent liquid antacid are no longer de rigueur before retirement au lit.


A numb tingling sensation in left hand and wrist still requires frequent application of a wrist splint to offer a modicum of relief but, proves relatively easy to bear (not that one has any choice in the matter). Last Friday, the dentist extracted an offending molar, bringing with it much relief so things began to look rather bright! Come Monday, I once more found myself needing to resort to the use of a back support, as niggles emanating from the lower lumbar region began to increase in intensity.


On Tuesday morning, stick assisted I managed to shuffle myself down to Open Church at St. Marks for coffee and a little conversation, the latter having seemed in short supply since my beloved's return to work (following last week's days off). Even though sundry niggling health concerns somewhat overshadowed the additional hours spent with ma belle last week, I was surprised to find how much more isolated and alone I began to feel now that her normal work pattern has resumed.


No sooner had I got through the door, on my lunchtime return home from St Marks, than the telephone rang. It was a call from someone at my doctor's surgery enquiring whether I'd received the letter and paperwork requiring a Fasting blood test prior to my next GP appointment (already arranged for the following day). I checked the post that had just arrived and, sure enough, there was the letter purportedly despatched on Friday 18th yet strangely postmarked 21/02/11 at 3.36pm. The spokesperson from the surgery had the audacity to suggest that I cancel the appointment with the doctor as I'd failed to undertake the fasting blood test. This was the last straw, I finally had an appointment with the doctor I'd been asked to see and they wanted to cancel it ( this was a cause for resentful hurt on my part bearing in mind the incident recorded in the third paragraph of my previous posting 'The Opening of the Floodgates').


In the event I attended hospital for the blood test on Wednesday morning before going to my doctors appointment in the afternoon, even though I knew the results would not be available within such a restricted time span. The doctor, however, did not require the fasting blood test results; the results of tests that I'd had the previous Tuesday morning were the only requirement - the fasting test being irrelevant to her investigations. The good news, on that front, is that all the results were normal; once again, I'm reassured to know that my health problems are entirely due to there being nothing wrong!


Last evening the severe back pains further intensified and became excruciating as I attempted to remove myself from the bed, to obey an urgent call of nature. I should have realized that lying down, whether on back or side, is the worst possible position to be in should the requirement to extract oneself from the duvet lair become necessary. The manouevre of rolling oneself to the edge of the bed, painfully letting ones lower limbs slide down towards the floor before one is able to elevate the torso, is neither elegant nor reassuring. Having returned to bed, ma belle made sure that my torso was adequately propped up with both standard and triangular pillows, thus enabling a slightly easier removal of myself from those environs at the due time. An additional dose of 100mg of tramadol served to further ease the subsequent manoeuvre.


At the moment my verbal outbursts, arising from a combination of frustration and intense dis-ease, could (to my shame) pass for coprolalia. It's not that my fuse burns any more rapidly, it's simply been a further victim of all pervasive cuts; hopefully, as ailments subside, a much longer replacement fuse will be found. For the present I just can't help feeling painfully frail, vulnerable and not at all nice to know.

The Opening of the Floodgates

Just suddenly found myself to be a totally blubbering wreck. I've no idea where the floods of tears came from but, it certainly must have performed some type of tear duct flushing. I was quite happily surfing the net when, suddenly, the armpit discomfort forced me into pressing my upper arms tightly against my torso; it was also essential to put on a wrist support / splint to remove the numbingly aching pain in hand and forearm. Having, from necessity, shut down the PC, I went downstairs to join ma belle.

As my beloved will be seeing her friend this evening, she wondered what I'd like for lunch and profferred the suggestion that maybe I'd like to take advantage of the OAP concession at the local chippie. The fish and chips from this particular outlet are really delicious, a wonderful inexpensive treat, so the suggestion should have been greeted with unconditional enthusiasm! Unfortunately, with my haphazard assortment of gastric disorders, the last couple of times I've enjoyed this feast there have been subsequent repercussions. As this thought passed through my mind, the almost hysterical tearful effusion occurred.

At this point my total distrust of the GPs I've visited recently came to the fore; I've increasingly been made to feel that I'm a nuisance and a waste of their time (wittingly or unwittingly I don't know). Since concentrating on treatment of GORD, any mention I, or my beloved, make of my underlying ME-CFS symptoms / ailments, are swiftly brushed aside / ignored. On the last visit I was asked, in an accusatory manner, why I'd been seeing different doctors (from within the practice), ignoring the fact that on several occasions follow-up appointments booked with the same GP, either online or at the surgery, have subsequently been cancelled, via 'phone calls from the surgery, and alternatives have had to be arranged. I'm also dependent on the availability of ma belle chauffeuse, to get me to the surgery, so also have to work around this; the alternative would be a two bus journey each way and, since 2003 I have found this mode of transport extremely stressful.

When I went to the hospital's phlebotomy department yesterday, for sundry samples to be taken, I was reminded that a consultant endocrinologist had informed the practice that certain of these tests, to monitor my condition, should be carried out at least every six months; this has not happened for the past few years (probably since the previous senior partner, who was my primary reason for remaining with the practice, retired from the practice).

Perhaps the fact that I'm currently on antibiotics, in addition to sundry other medications, suggests that I'm at a particularly low ebb. The opening of the floodgates proved difficult to understand, nonetheless, as I haven't been feeling at all depressed (just ill)! Maybe I'm  a little more frail (and vulnerably de-energized) than usual having missed my most recent physio / acupuncture treatment; the physios services were required, to deal with some very urgent cases, by another district within the health authority, which no longer employs anyone in an equivalent position, quite likely a result of the ConDems ideological cuts. 

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P.S. a rather more upbeat postscript to this posting can be found on my 'Mal's Murmurings' blog, apropos the floodgates.

Romantic Promise and Actual Practice

This should be a really romantic week, today being Valentine's Day and Saturday being our Wedding Anniversary and, what's more, my beloved has the whole week off work. Of course things never go fully according to plan; this evening we were due to dine with Helen's sister Janet and Graham (her spouse) but unfortunately, owing to the erratic behaviour of my health - with special reference to the digestive tract - it seemed much safer, yesterday, to cancel that arrangement.

So, what romantic treats has today brought. It was wonderful to enjoy more of my essential morning lie-in snuggled up to my beloved, who has usually headed off to work about three hours before my routine emergence from the duvet realm.

Other events were not quite so romantic; a visit to the dentist revealed a dental abscess, for which I'm now taking a course of antibiotics, whilst later in the day a further visit to my GP's surgery was in order.Tomorrow, I'll be headed off to the hospital for a few more blood samples to be taken, prior to a further GP appointment (arranged for next week).

GP or not GP that is the question

and nothing has improved since the previous posting, simply a more sustained discomfort; apart from the spasmodically acute pains in chest and abdomen, yesterday saw a return of my faint giddiness which cut short a visit to Helen's Church (Wesley) for a spot of lunch.

Up until 19 January, apart from my usual tramadol (painkiller), mometasone (nasal spray), I'd be taking 2x30mg lansoprazole (proton pump inhibitor) each day but still needing the odd dose of Gaviscon at night. On the 19th, the doctor I saw took me off the lansoprazole and switched me to a different ppi, namely 1x40mg esomeprazole daily.

On 9 February, I had the appointment mentioned in my previous posting (Worth A Mention?). In his effort to ensure that he involved me in the decision making process, the GP I saw this time somehow decided that I should continue with the esomeprazole (although it was proving less effective than the double dose of lansoprazole - except briefly on the initial few days) but also prescribed 10mg domperidone (a dopamine antagonist) to be taken 3 times a day.

Apart from the increased discomfort, and even occasional bouts of volatile diaorrhea, I once again find myself wondering whether the chest pains are in fact directly connected with my gastro-oesophageal problems. I quite simply had the feeling that the GP just wasn't interested!

Worth A Mention?

strange how medications to alleviate a condition can make that same condition much worse

never sure what's a reaction to new medication and what's part of the underlying condition

Having just "tweeted" the above (apparently trivial) observations, I suddenly realized that they may be expressing a deeper underlying concern

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I knew when I made the appointment that it was a follow up to check how a change of ppi is affecting me. Informed GP that for a few days it seemed better, explaining an inadvertent side effect of the extra dosage of the former ppi, but now it didn't seem as effective as I was experiencing a greater degree of discomfort. The GP of course asks me, do I think that my current discomfort, an amplified version of what I'd been already been experiencing, was related to the gastric problem. Having acknowledged fairly recent A&E incidents which confirmed that there was no apparent heart problem, and last years endoscopy finding no obvious cause for my gastric problems, I could only reply that according to previous GP guidance that did seem to be the case.

The outcome was a decision made, with my uninformed collusion, that I should continue with the new ppi but also take a dopamine antagonist 3 times per day. The first couple of days on this new regimen and, I'm feeling markedly more discomforted, in the gastro-intestinal / gastro-oesophogeal stakes, than I've felt for quite some time. The frustration continues. The question is, do I persevere?

Having stated the question, I now return to the larger problematic picture. Any visit to a GP tends to focus on a specific problem and, as a result, other ailments that are part of an ongoing chronic condition are rarely given an airing, in the course of a consultation. The doctor is presumably well aware that I need to take pain-killing medication, primarily tramadol, to treat persistent muscular and skeletal pain but, I sometimes do find myself wondering whether the broader underlying condition could also be responsible for my gastro-intestinal problems.

Unfortunately treatment only seems to be available for specific symptoms whilst the larger underlying picture seems to be trivialised or ignored. Indeed, as an example, there has always been a marked reluctance on the part of the government, and the Medical Research Council, to carry out bio-medical research into the neurological condition Myalgic Encephalomyelitis. One feels, at times, afraid of mentioning the aching tenderness in armpits and under the chin, the sharply bruised leaden hollowness in the lower limbs whilst still abed, a sense of ones skin being pulled too tight over one's flesh, random virulent nightsweats, degrees of orthostatic intolerance, a not infrequent need to don supports on ankles, wrist, back etc in order to cope with the days most basic tasks. 

Don't get me wrong, I've long since learned to cope with the daily onslaught of aches and pains and, I generally manage to pace myself sufficiently to avoid a major crash but, that doesn't mean that life is easy, much as I enjoy it. 

Siskin at feeder