sunshine and celebration

Sometimes it seems as if the day is almost over before I even get started. In one way this is good, it’s generally a sign that I’m appreciating each waking moment, so much so that it’s sometimes a real struggle to stop myself resenting the earth’s rapid orbit.  Recently we’ve been sighting a bright glowing orb in the sky, bringing a little warmth and elevating one’s spirit; after weeks of dull wet days the sunshine has proved most welcome.

As my beloved took a few days off work, around the time of our wedding anniversary, time seems to pass even more sweetly as we enjoy each other’s company. Visits to Café Culture, for a cuppa and cakes, and Al Bivio Ristorante helped heighten the sense of celebration. We also paid a visit to the garden centre at Otley where I acquired a new bird feeding station for the garden, finally using the vouchers that I’d received for my birthday last June; although the centre is less than ten miles away this was the first time I’d really felt up to spending a little time there browsing around. I especially enjoyed looking at the reptiles in the centre’s pet shop.

Meantime, I’ve acquired 5 more golden and 5 white cloud minnows which, having first spent ten days in my quarantine tank,  have now been added to the Main aquarium.  It’s really quite strange that, having introduced my beloved OH to blogging. I have to check out Helen’s blog to see what I’ve been up to!

On Wednesday I had an appointment with my GP, a lesion on my leg, which I’d been attempting to alleviate with a 1% hydrocortisone preparation, wasn’t showing any improvement (quite the opposite in fact) so I was going to see the doctor who specialized more in skin disorders. He was quite baffled by this particular sore spot, it was quite unlike anything he was familiar with, definitely not discoid eczema or Bowens etc;  so he prescribed a potent topical corticosteroid (Mometasone Furoate) which I’ve to apply once a day for a fortnight. He also checked a small occasionally weeping lesion on my chest which he says is a basal cell carcinoma and has duly referred me to the District Hospital. [I’ve had previous experience of having a bcc excised – see ‘Sunshine and Blanket Stitch’] If the ointment applied to my leg hasn’t healed the lesion he suggests I also have the specialist look at that when I have my appointment for the bcc!

Another positive outcome of the visit was to confirm that the recent X-Ray of my hips, following a quite prolonged period of chronic pain, apparently emanating from the right hip, showed no abnormality on the right hand side but, it did show that I had arthiritis on the left-hand side. Fortunately, after copious doses of tramadol & co-codamol the pain had eventually abated!

I received a further acupuncture treatment on Thursday and, I’m no longer averse to expecting resultant miracles. Life goes on and I’m determined to enjoy it – if only I could discover some refreshing sleep all manner of things would be well!   

where to begin

Just another typical morning; cup of cold coffee on the bedside table, clock radio spewing out a familiar mix of entertainment and banality and, I’m still abed, even though the ante-meridian hour has passed eleven!

Today’s the day I’m to visit my GP to check whether the medication, which she prescribed three weeks ago, is assisting me with sleep. Problem is, after the first couple of nights the familiar routine of restlessness, coupled with fitful brief snatches of slumber, still prevails. Most of the time, after a predominantly restless night, I’m drowsily awake around the time my beloved leaves for work (around 7.30am) before drifting off into the land of dreams. The period of drowsy wakefulness is, generally, when my beloved places a (hot) cup of coffee on the bedside cabinet [see opening paragraph].

For all the intermittently fluctuating pattern of sleep, my vividly Technicolor dreams frequently veer towards a nightmare scenario, one where the goal always slips from one’s grasp as one runs, walks, or crawls desperately towards it; walkways erode and crumble beneath ones feet, a doorway inevitably narrows just as you attempt to squeeze through, a bus departs just before you reach the stop. Normality and fantasy indelibly intertwined.

Sundry muscular and abdominal aches and pains, doubtlessly, contribute towards my fitful sleep, as well as the frustration of my daytime hours. I shortly go and see the doctor but, where do I begin? Suddenly I realize the appointed hour has arrived and, walking stick enabled / encouraged, I make my way to the Surgery.

On being called in to the consulting room, Dr D makes me feel immediately at ease. She notes the spinal related nerve pain in my left arm but, is more intent on finding out about my sleeping habits; meantime, a regime of occasional ibuprofen alongside the tramadol should be maintained to alleviate the sundry aches and pains.

The GP has suggested that I should try taking the mirtazapine at around 6.00 – 6.30 in the evening. The thinking goes that, as I’m really drowsy in the mornings, the mirtazapine is probably contributing to the drowsiness and, if taken earlier (than is normally suggested) it may well help induce sleep during the appropriate nocturnal hours. The doctor suspects that the dreams may well have been heightened by the medication but, that should settle down in due course; she also said that she would be contacting Julie at the Chronic Fatigue Unit, with a view to my having a refresher course to help me with my “pacing”.

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.

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. 

Like a circle in a spiral

Once upon a time one picked up a telephone and rang through to the surgery to order a repeat prescription but, sadly those days are gone. Once upon another time, my local pharmacy did the job for me but, on almost every other occasion, something went wrong (at the pharmacies collection and delivery end I suspect – having had no such problem when I changed to the next system for placing repeat requests) and it took an increasing period of time before the prescription was fulfilled.

Next came a great boon; after faffing about on line for initial registration, it became conveniently possible to order a repeat prescription online. No problems with that system until, this morning, when I was greeted with a different signing on screen. The system has evidently been changed to improve efficiency. Unfortunately the new system requires a “user name” which has not yet been allocated. I duly rang the surgery who informed me that a) you will not be able to use the system this week and, b) you will be receiving a letter (via snail mail) in a few days informing you about the new system!

It would have been helpful if we had been informed that the system was going to be inaccessible, thus allowing us to place the repeat prescription request in advance! Do I take two bus journeys, each way, to drop in a repeat prescription request or, do I give the local pharmacy another try? Perhaps I’ll wait until ma belle chauffeuse is available and drop in the repeat prescription form that day; this latter approach could save a lot of additional frustration.