FRUSTRATIONS of a Medical and Medicinal Kind

This post also appears on 'Mal's Murmurings' under the title 'CONSULTATION FRUSTRATION'

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It shouldn’t really be like this; anger and despair turn out to be the result of a visit to the GP. Having finally yielded to my beloved’s advice, I got around to arranging an appointment with my local doctors practice. My reluctance to make this appointment is the knowledge that they’re only equipped, or allowed the time, to deal with a specific singular ailment, not a complex multiplicity or whole people.

First annoyance came when he (being the doctor) stated that the medications I was on had a tendency to conflict / counteract each other to some degree. Considering the length of time I’ve been on this assortment of potentially self-conflicting cocktails, I begin to wonder why the practice had been oblivious to this over the course of the past couple of years.

When conflicting advice, between medics in the same practice, as to whether certain meds should be used pre-emptively or only when absolutely necessary, adds a further quandary for the patient as to the efficacy of using the practice at all.

Anyway, a couple of the prescribed medications are no longer to be used; they are replaced by a single different medication. Worrying for me is the following statement, on the Patient Information leaflet:

 take special care if you:

suffer from conditions like abdominal pain, muscle weakness, mental confusion.

[there are times – regularly for the first two, occasional for the latter - when I can tick all those boxes]

The doctor further suggested that I should use co-codamol instead of tramadol, even though I’d had to stop using co-codamol, because of the effect it was having on various abdominal organs, a few years back. Tramadol, thankfully, remains on my prescription.

Next came the little prep talk suggesting Graded Exercise Therapy would help, even performing the same limited exercise on ‘bad’ as well as ‘good’ days. Obviously he has no understanding of what a PwME’s (even moderately so) ‘bad’ day is like. I explained that even the visit to the opticians, a limited amount of exercise involved, was sufficient to cause payback, his response was that obviously was too much exertion!

Well, it seems that I’ll have to stick with my own pacing regimen which essentially curtails any exertion on bad days and, ensuring that I always have some spoons in reserve when I exercise on good days.

The preceding events, at least their physical & mental toll, necessitate a temporary postponement of my visit to hospital for further blood tests

I’m quite proud of myself for refraining from the use of expletives during this little rant; expletives remain in my personal domestic space for the time being

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Malcolm Evison doctor even told me that there's no connection between overload of pain stimuli and the corresponding nausea that I experience !!!

GOOD TIMES - BAD TIMES - Strangely NORMAL TIMES

Wrists in strong supports, left hand clasped tightly in armpit by right upper arm, right hand grasping left shoulder, upper left arm clasped tightly to side, and I want to scream. The nagging aching pain and discomfort little eased by 100mg of tramadol swallowed a couple of hours ago.

Everything felt fine when I decided to move from reclining to upright posture, but then just switching on laptop and tapping a few keys was sufficient to bring back the heavily aching nausea-inducing pain in the upper arms; the sensation not too dissimilar to a state of total exhaustion when one is prohibited from rest or sleep.

When lying down a throbbing ache envelops my knees; bending knees to make a tent under my shrouding fleece temporarily alleviates the gnawing knee pain. Next it’s the toes that are the problem, a sudden burning sensation in lower digits all too swiftly feels as if my skin is being grated by the restraining pressure of what are usually quite normal socks. This latter item swiftly becomes an instrument of torture and, their removal does little to relieve the sting.

It’s beginning to feel like some sort of punishment as atonement for having two reasonably good days. On Friday I finally managed to visit the opticians, first time I’ve managed that since 2003, previous attempts having been thwarted by sensory overload and/or panic attacks. I t really felt like quite an achievement to have undergone a range of tests by both optometrist and optician. The optometrist was genuinely interested to learn a little about ME (and my denouncing of the wastebin CFS diagnoses) and really put me at ease.

Fired up by this amazing achievement, next day I decided to attend to one of my problem PC’s that I hadn’t touched since September. No amount of online research (and subsequent application) resolved the issues that had thwarted my efforts last year. There was nothing for it other than fresh installation of Win 7 and countless updates to be applied.

By mid to late evening I was quite shatteredly exhausted but, having go to bed sleep proved extremely elusive. Illusory sleep turned out to be the lesser nocturnal oppression. Wrists, elbows, lymph nodes, and lower digits screamed out for attention. Tubular bandages over elbows and much of the arms, elasticated metal spined wrist supports offered little in the way of pain and discomfort relief and, the burning flayed skin of the toes screamed out in accompaniment to my expletive laden vocalising. An application of moisturiser to feet and toes proffered temporary alleviation but, I’m not sure whether it was the emollient or the massaging effect of its application that provided this relief. This procedure was repeated several times during the course of the next couple of hours.

 By 11.19 this morning I reluctantly emerged from the duvet lair only marginally less exhausted than the previous late evening. What of today? You may well ask! The first paragraph describes some of my afternoon.

Season's Greetings

Patient's Progress

Emotional resilience remains with me, apart from minor daytime lapses and nocturnal responses to my own unique brand of peripheral neuropathy. These nocturnal skin flaying, burning, tingling, claustrophobic sensations seem to afflict my whole psychosomatic being with expletive laden outbursts and foot stomps around the bedroom whilst my beloved sleeps contentedly.

Perhaps I should explain that the symptoms afflicting my whole being are, superficially at least, only being felt on the upper parts of my toes. The claustrophobia represents these pitiful digits' need to escape the confines of any bed-linen and / or duvet! There just doesn’t seem to be any chance of finding a comfortable position for the lower limbs, in order to settle down to sleep. Sundry intermittent discomforts play havoc with the bodies need for rest yet, quite strangely, by the time my beloved is waking from her slumbers I’m able to relax sufficiently to enter the Land of Nod!

Sudden onset daytime bouts of exhaustion are currently in the ascendant, frequently accompanied by wrist, elbow and knee pains demanding application of sundry splints and supports, which seem to simultaneously ease the nausea inducing tenderness emanating from axillary lymph nodes. Painkillers are then required as, once again, I’ve failed to divine that a pre-emptive dose would have been in order!

Ma belle frequently feels frustrated, and even guilty, by her inability to alleviate the intense discomfort that I quite frequently experience; I know that my suffering would be far greater without the experience of love and care for each other through which I am truly blessed.

#ME – There and Back Again!

Sometimes it seems that even that moderately low plateau of stamina, is a level too high to return to. At present, a dispiriting pain and ache level of exhaustion seems intent upon taking permanent residence in my limbs and torso; at times its tentacles seem to stretch discomfortingly into head and psyche as well!

There’s always a price to be paid for even a modest additional expenditure of physical and emotional stamina, even when that expenditure itself seemed beneficial. Recuperation from payback seems to be tidal in nature; just when one thinks that the energy tide is in it swiftly ebbs away.

On Saturday 17^th some long standing friends made their way across the Pennines to Harrogate. Upon their arrival at the Cedar Court Hotel they ‘phoned to invite us over for beaucoup de catch up conversation and an early evening meal. The three to four hours spent with them passed in what seemed like one hour tops! Stamina resources didn’t seem to be a problem at all, I simply basked in the socializing experience.

Next afternoon, our friends joined us chez nous, for further chats and an early evening meal’ Fortunately, I’d already prepared a curry, earlier on the Saturday, so there wasn’t too much effort involved in dinner preparation.

Once again the few hours together seemed to pass at supersonic speed. For a while I felt as if my stamina was heading back to pre-illness levels and, I felt quite on form to co-host our monthly Bible Study group, chez nous, on the Monday afternoon. The study and fellowship proved rewarding as usual.

On Tuesday 19^th a degree of payback kicked in. A shattered painful exhaustion, swiftly metamorphosed from simple over-tiredness,to a sharp burning sensation on the uppers of my feet and simultaneous excruciating pains in my upper limbs, Meantime my torso felt crushed and bloated. That’s just a fragment of the discomforting regimen of the day. Wrist, elbow, and back supports were intermittently required, alongside a frequent recourse to tramadol.

By the Wednesday morning I felt as if I was being gradually restored to normality, only to regress on subsequent days. At least I’m now having less recourse to painkillers.

By the beginning of this week I feel as if emotional resilience has returned; all that remains are my more regular aches, pains, and sudden onset bouts of exhaustion.

 As I look out on blue skies, all’s well with the world.

Dis-Arming Dis-Ease

Being tickled so hard that hysterical laughter turns into a painful scream, I wonder if you know that feeling, because that’s how I feel now except without the laughter! Suddenly the newspaper felt too heavy, or at least too awkward to hold; the wrists succumb to a pounding tympanic throb, so I apply the necessary strappings. Next the inevitable discomfort in the armpits, suddenly the skin feels at least two sizes too small for the torso it embraces; that aching laughter sensation, referred to earlier, holds both inner upper arms in thrall. I try, with only a modicum of success, to dampen the nausea response by clasping the upper arms almost tourniquet tight against my body.

To an onlooker it must seem as if I’ve been suddenly shocked into a     distorted catatonic state.  

It takes some time before I pluck up courage to extend my forearms away from the upper-arm locked torso. A sigh of relief murmurs forth, as I release myself from this temporary stasis; it’s almost as if I’d been holding my breath alongside clasping the upper arms to torso.

It’s proving difficult to catch up on some much needed rest, last night had been one of intense dis-ease best summed up by my posting on facebook at 3.30AM:

Once I stop feeling
my skin's being flayed
whilst discomfort dances
leadenly

over joints
and muscles
then

I may get
some much needed
sleep

Night night folks!

I’m afraid the “Night night folks” was a little too optimistic. I finally managed a little, scarcely refreshing, shut-eye from around 6.00AM.

What goes around ...

First, (or at least at a randomly selected point on the arc of unwellness), the eyelids struggle against the gravitational pull, an overwhelming ache through sinuses and tingling cheeks; I finally admit my weakness and go to lie down on the sofa. By this time I acknowledge a need for a couple of strong pain-killers, as well as wrist and palm supports. The dull throbbing ache in the wrist seems to transmit a negative signal to the armpits and axillary lymph nodes.

Next, an extremely discomforting, nausea inducing, hollow ache begins; it feels as if it floats on a leaden bed which wraps around the upper inner arms. I squirm and mutter distraught moans, squeeze upper arms tightly against my torso. Within a few minutes the squirming becomes even more intolerable; what next?

Turn onto my left side, interlock my fingers, lift the heel of the right hand into the other hands palm; back of the right hand bonily supports my left cheek. Further agitated juxtapositions of hands, arms, torso, perform an erratic ritualistic dance. Eventually the nausea eases, tenderness of lymph nodes, and discomforted wrists, decide to keep me company a little while longer.

For now things are easier, just the usual niggles; it would be nice to think it won’t happen again but, unfortunately, it’s never too far away.

BBC CONSULTATION - Government plans to rip out the heart of the BBC

Have a look at this: https://secure.38degrees.org.uk/bbc-consultation-thankyou

It just took me just a few minutes to fill in the official survey about the future of the BBC.

Government plans to rip out the heart of the BBC are taking shape. Imagine a BBC where newsnight is riddled with adverts. Or a BBC so underfunded that independent news becomes a thing of the past and the airwaves are dominated by Rupert Murdoch’s media. This is what the Government wants - we need to stop them.

Just before the summer break, the government snuck out a ‘public consultation’ on the future of the BBC. It’s full of gobbledegook questions - they were obviously hoping that nobody would respond! So the 38 Degrees staff team has ‘translated’ the questions into plain English, and the time’s come to make sure they hear our voices.

Without our voices, the government can claim that people don’t care about the future of the BBC, opening the doors to Murdoch. So can you add your voice and stand up for the BBC? Just click this link to fill out the survey now:
https://secure.38degrees.org.uk/bbc-consultation-thankyou

I’ve included my responses to the survey questions below:

+++++++++++++++++++++++++++++++++++++++++++++++

How well is the BBC serving its national and international audiences?

The BBC, despite the shortfall in its income (and costs for world service being wrongly charged to them instead of the government), provides a prestigious and excellent service. I regularly listen to Radio 2, 3, 4, 4extra and 6 music, and the majority of my TV viewing is on BBC One, Two, Four and occasionally BBC Three. The catch-up and other i-player functions are proving indispensable. Natural History is a particular strength.

Which elements of universality are most important for the BBC?

Drama, Documentaries and entertainment provided by the BBC are generally of a very high standard and must be maintained alongside their news and current affairs coverage. Sport, which is nowadays very commercialized, would be best handed over to the commercial channels.

Is the BBC’s content sufficiently high quality and distinctive from that of other broadcasters? What could improve it?

Improvement is difficult to contemplate as the BBC's content generally stands head & shoulders above other media providers.

Where does the evidence suggest the BBC has a positive or negative wider impact on the market?

The BBC has always been a provider of quality programmes, whilst many of the commercial providers seem to revel in catering to the lowest denominator.

Is the expansion of the BBC’s services justified in the context of increased choice for audiences? Is the BBC crowding out commercial competition and, if so, is this justified?

I value the range of services provided by the BBC and, I consider that any well managed commercial organization has only itself to blame if it cannot stand up to the competition! Only the weak fear competition!

Has the BBC been doing enough to deliver value for money? How could it go further?

Excellent value for money. It could however stop paying exorbitant salaries / fees to presenters such as Wogan, Evans, and the unlamented Clarkson.

How should we pay for the BBC and how should the licence fee be modernised?

 

I would be happy to pay more for the current arrangement but with welfare benefits paid (toward the cost) for the less well off

hazed out days

Just a vague dull irritating ache throughout torso and limbs, feeling as if a detached “I” was looking on pityingly. For the past couple of days this seems to have been my exhaustingly shattered state of being, an exhaustion of mind and body, almost as if it’s payback for forcing myself out of bed after a mere 11 hours of intermittent unrefreshing sleep.

 I expect, and reluctantly accept, those cloying nausea inducing aches and pains, seemingly emanating from cervical and axillary lymph nodes. Familiarity has also enabled me to accept the more erratically intermittent acute pains in joints and muscles, which pain-killers can control to some degree.  Even the gnawing, discomforting, symptoms of IBS never seem quite as disconcerting as this seepage of hollow ache which seemed to embrace both psyche and soma.

Today, I at least feel awake and, I’ve managed to prepare a kedgeree for our main meal as well as a gently peppered chicken, peppers and mushroom casserole for Sunday and Monday’s lunch time. My halo has been polished once more. I’ve got to admit though that the slightly warmer weather does me no favours in terms of stamina; I only wish its enervating effect could be transformed into true relaxation, serving to ensure some long needed refreshing sleep.

At least I’ve managed in recent weeks to enjoy BBC4’s excellent coverage of Cardiff Singer of the Year, and by way of contrast, mentally grooving to ‘Jungle’ and Mark Ronson, amongst others, transmitted to our sitting room courtesy of the BBC. The sound of each event has been much enhanced via the SoundStage (a sound bar with built in sub-woofer) bought by my beloved for my recent 71^st birthday.

Akala on Britain's inherent Racism

Having just watched and enjoyed  Frankie Boyle's Election Autopsy on BBC iPlayer, I thought I should share Akala's contribution to the programme: